SPRING 2002 MITOCHONDRIAL NEWS United Mitochondrial Disease Foundation
(which will vary from time to time), Ask the Mito Docs and They Will Respond and stop once symptoms become In the Spring of 2001, UMDF introduced a new look for its web site and added a feature significant. called Ask the Mito Doc. Members ask questions regarding mitochondrial diseases and they are forwarded to a mitochondrial specialist to respond. The questions and answers THE QUESTION IS: have been very informative and UMDF felt compelled to share some responses with all its members (especially for those who do not have internet access). Please note that I understand that a lactate/pyru- information contained in "Ask the Mito Doc" is for informational and educational vate ration >20 might suggest that an purposes only. Such information is not intended to replace, and should not be individual has an OxPhos disorder. interpreted or relied upon, as professional advice, whether medical or otherwise. Can you tell me why? Also would this ratio apply to urine lactate and Responders for this issue: Bruce H. Cohen, M.D., The Cleveland Clinic Foundation, OH pyruvate, blood samples, cerebral and Richard G. Boles, M.D., Children’s Hospital of Los Angeles, CA. spinal fluid or all three?
RESPONSE FROM: THE QUESTION IS: energy. Incoordination may be sec- ondary to muscle weakness or low BRUCE COHEN, MD I have adult onset mitochondrial energy in the nerves. You may want to get out your problems, which have not yet been I wish that I could answer your textbook of metabolic pathways clarified as to which metabolic path- question regarding activity guide- here. There is no easy way to explain ways are involved. Meanwhile, I find lines, but I cannot. In fact, no one this. However, if you follow the dot- that cold exposure as well as physi- can, except perhaps yourself. When ted lines, it all makes very good cal activity can lead to considerable you are experiencing significant pain sense. Here we go. weakness, incoordination and pain or weakness, that is the time to stop. The ratio of lactate to pyruvate in my legs and feet. I no longer know The amount of allowable activity reflects the ratio of NAD+ to NADH. how far I can go in a day and how to varies substantially among patients, Glucose is converted to pyruvate, determine the significance of pain, and, as you have found out, there is which enters the citric acid cycle, which is the first of the symptoms tremendous variability from time to where high energy NADH is generat- that develop as the day goes on. time even in the same patient. ed. The electron transport system While I want to be as active as possi- In some patients, rhabdomyolysis accepts the high energy NADH and ble, I do not want to cause tissue or (muscle breakdown) can occur with as it is converted back to NAD+ elec- nerve damage. Could anyone sug- exercise. Other potential triggers for trons are pumped across the inner gest guidelines to help a patient rhabdomyolysis include illness, Continued on page 5 determine when to continue or cur- fever, fasting, alcohol and stress. tail activity? Rhabdomyolysis should be suspect- ed when the urine becomes "Coca RESPONSE FROM: Cola colored". If present, medical RICHARD BOLES, M.D. attention should be immediately Mitochondrial disease can be sought and hydration (by mouth or thought of as like an electrical power iv) given to avoid possible kidney crisis: the lights tend to "brown-out" damage. at times of peak energy demand, for Please do not take this response example during extreme weather to mean that exercise is dangerous conditions when everyone is run- and should be avoided. Many ning the heater or air conditioner. "mito" specialist strongly believe the Similarly, in mitochondrial disease opposite: that exercise is necessary Turn up the power! the body's cells suffer from low and can improve muscle strength available power at times of peak and endurance, as well as general UMDF Mito-Dallas energy demand, for example during well being in patients with mito- 2002 Symposium hot and cold weather, exercise, fever, chondrial disease. The best advice is illness in general and stress. moderation: don't over do it or June 6-9, 2002 Weakness and pain are typical under do it. Exercise frequently and See page 9 for schedule symptoms when muscle is low on up to your individual tolerance Chairman’s Report Board of Trustees Charles A. Mohan, Jr. - Chairman This continues to be another exciting year for UMDF. We are excited Mark Fleming - Vice Chairman about the upcoming UMDF Symposium, which will be held on June 6-9, Stan Davis - Secretary 2002, in Dallas Texas. This will be the 5th symposium of its kind on mito- chondrial disease in the United States. The mother & daughter team of John DiCecco - Treasurer UMDF Trustee, Jane Clarke McManus and former Trustee, Kathryn Parsons Bruce H. Cohen, M.D. have worked diligently to construct a sym- Charles L. Hoppel, M.D. posium that promises to be as great and as Jennifer Lyman big as the state of Texas. Keep an eye out Jane Clarke McManus for the registrations forms that will be Nick Rillo mailed soon. Rand Wortman The UMDF has just reached another Scientific Advisory Board milestone. Dr. Georgette Demes, UMDF Michael J. Bennett, Ph.D., FRCPath, DABCC Director of Development and Programs, has successfully organized the first gathering of Gerard T. Berry, M.D. doctors and scientists to discuss the forma- Richard G. Boles, M.D. tion of an epidemiological study on mito- Salvatore DiMauro, M.D. chondrial disease. Scientists, researchers Carol Greene, M.D. and doctors representing various disciplines Richard H. Haas, M.B., B.Chir. gathered at the UMDF office for a day of Richard Kelly, M.D., Ph.D. presentation, discussion and exchange. Douglas S. Kerr, M.D., Ph.D. The UMDF patient registry database was demonstrated and received ter- Nicolas Krawiecki, M.D. rific reviews from the attendees. It was decided that the UMDF registry Arnold Munnich, M.D., Ph.D. should be used as a foundation for investigation that may provide some Robert K. Naviaux, Ph.D., M.D. very good data for review. We will keep you posted on the development of William Nyhan, M.D., Ph.D. new questionnaires for updating your medical information. Brian Robinson, Ph.D. The UMDF Research Grant Program, chaired by UMDF Vice President, Eric Schon, Ph.D. Mark Fleming, is experiencing more activity than ever. Consolidating the John Shoffner, M.D. hard working efforts of so many UMDF members along with terrific results Eric A. Shoubridge, Ph.D. of UMDF Chapters is beginning to reap benefits. This year's grant award of Keshav Singh, Ph.D. $250,000 is getting the attention of the scientific community and UMDF is David Thorburn, Ph.D. being recognized as an effective funding source for research. UMDF contin- D.M. Turnbull, M.D., Ph.D. ues to promote and adhere to its 5.25 million dollar fundraising initiative. Rajiv R. Varma, M.D. We are on target and looking forward to awarding $500,000 in 2003. Keep Georgirene Vladutiu, Ph.D. up the great work! Douglas C. Wallace, Ph.D. The UMDF Newsletter, Mitochondrial News, continues to set the stan- dard for foundation newsletters. It used to be very difficult to find up to National Office date and accurate information about mitochondrial disease but now all we Georgette Demes, Ph.D. have to do is refer to the articles contained in the UMDF Newsletter. The Director of Development and Programs first newsletter was 8 pages long this issue will be 24! Support Staff Isn't it amazing how much good has resulted from a disease so devastat- Betsy Ahearn ing? President Bush, in his State of the Union Address said, "As we gather Jean Bassett tonight, our nation is at war, our economy is in recession, and the civilized Antoinette R. Beasley world faces unprecedented dangers. Yet the state of our union has never Robert Bolewitz been stronger." "We begin to think less of the goods we can accumulate, and more about Doug Beckett the goods we can do..." Julie Hughes "My call tonight is for every American to commit at least two years - 4,000 Melinda O’Toole hours over the rest of your lifetime - to the service of your neighbors and Kara Strittmatter your nation..." Sandy Turi Do the worst of situations and times bring out the best in people? Do © The United Mitochondrial Disease Foundation. tragedies draw more of us together rather than push us apart? All rights reserved. Yes! UMDF’s intent is to keep you informed - we ask that you always discuss any diagnoses, treatments, or Yours toward a cure, medications with your personal physician. UMDF assumes no liability for any information in the Mitochondrial News. Chairman, UMDF
2 Mitochondrial News Spring 2002 National Office Updates Visit the By Georgette Demes, Director of Development One of the first questions I am asked by major UMDF prospective supporters of UMDF is: How large is your membership? This number is fundamental Web s i t e to promoting UMDF as a deserving cause for as it has recently been updated! major funding. To better position UMDF to ¥ Participate in the new Instant Poll attract grants from leading foundations in the Complete the Patient Survey on the health advocacy arena, UMDF is beginning a ¥ "Burdens of Mitochondrial Disease" process of clarifying its membership. Annual dues paying members receive these benefits: ¥ Learn or refresh your knowledge Triannual newsletter into the genetics of mitochondrial disease with our new and improved Networking other families, individuals and physicians Genetics page Members only web site areas, such as Ask the Mito Doc, Patient Registry, etc. ¥ Track the chapters and new support Access to recent publications, videos, and promotional materials groups as they become available Discounts on annual UMDF symposia registration and find a group in your area with Please help us clarify membership. If you are uncertain with your current our new map membership status, please call or email the office and our staff will be happy ¥ Check out the Library and Medical to assist you. Professional pages for new articles STAFF NEWS ¥ Browse our new Resources page Julie Hughes has switched to part time. In her new role, Julie will be for medical & mitochondrial related devoting more time to support groups and family support. links, local resources and online Effective February 19th, we are happy to announce the arrival of Betsy support Ahearn to our staff. Betsy will assume Julie's former full-time position as ¥ Explore the Research & Grants executive assistant. She brings many diverse skills and is a welcome addition page for the current research pro- to our UMDF team. jects, learn the results of the Symptom Questionnaire (from the 2001 Symposium in San Diego) and review the Research Holiday Card Program Almost Triples Expansion Project's 5-year plan & Amount Raised in 2000 the corresponding 2002 Activities ¥ Examine the Patient Registry The response to the 2001 holiday card program was overwhelming! database; for your membership ID# The national office, through the efforts of many of our wonderful UMDF and password call UMDF at members, received over $40,000 in holiday contributions and, at the 412-793-8077 same, received 228 new members (over $9,000). A huge thank you to all of those who participated in sending holiday cards! The UMDF Website Team is The national office tried something a interested in your feedback; little different this year with the Holiday contact us at [email protected]. Card Program. The cards were mailed to We hope you find members and to past donors. We also the website helpful! combined the card with membership renewal. (The membership renewal will be different next year as we are moving to UMDF Web Site a rolling membership. Members will Receives Award receive dues renewal notices on their anniversary date.) The Holiday Card's success was partially due to the beautiful winter design by Chris O'Brien. Mitochondrial disease has not stifled her artis- tic talents. Chris is currently a member of the Iowa Watercolor Society and her work has been exhibited in shows, galleries and in permanent art Susan Zelenko of Philadelphia, PA, collections in Western Pennsylvania, Illinois, Arizona, as well as through- nominated the UMDF web site and out Iowa. In 2001, Chris was the local recipient of the MDA Personal the Mitochondrial Research Society Achievement Award for the Cedar Rapids and Cedar Falls districts in site. Dr. Martin L. Kutscher, M.D., Iowa. Thank you Chris for sharing your talents with UMDF and helping of PediatricNeurology.com was us Redefine Hope! impressed with devotion and completeness of both sites.
Mitochondrial News Spring 2002 3 UMDF Research Update Research Expansion Project By Mark Fleming, Vice Chairman, Board of Trustees UMDF Research Coordinator
This year will be packed full of REP-related activities: Expand the current research grant program to include specific goals of the REP. Our increase in grant funding allows us to fund new areas of research in support of the REP. The change will be in effect for our 2003 grant cycle. We expect to fund new areas each year as our 5-year, $5 Million research goal comes to fruition. Convene an epidemiology workshop with epidemiol- 2002 brings us into the second year of the Research ogists and mitochondrial specialists. Bringing togeth- Expansion Project (REP). er specialists in epidemiology and mitochondrial The goals of the REP are threefold: medicine will help design an epidemiology grant pro- Establish Mitochondrial Research Centers gram which will attract epidemiologists and lead to a Establish Multi-center Mitochondrial Clinical Trials successful long-term study. We will also incorporate changes to the patient registry to facilitate gathering Establish an Office of Mitochondrial Medicine epidemiologic data useful for future studies. at the National Institutes of Health (NIH) Study the use of the MICAR program to gather death We expect to accomplish all of these by the year 2006. certificate data from various states and examine them for possible mitochondrial disorders. This data could support the creation of more disease codes for mito- In addition to all of these activities we are making ini- chondrial disease, gain a basic understanding of the tial contacts with officials at the NIH and Congress to lay prevalence of mitochondrial disease, and demonstrate the groundwork for an Office of Mitochondrial Medicine the need for an epidemiology study. We are exploring at the NIH. We are pursuing this carefully by identifying the best approach to this project with data gathered potential sponsors within these institutions. If you can from California (the most populated state). help in this effort please contact the UMDF. The efforts of the REP are quite involved and complicat- Create a report of the status of public and private ed. Yet this shouldn't be a surprise given the complicated mitochondrial disease research. The understanding nature of mitochondrial disease! We have much to do in gained from the report will help the UMDF deter- order to overcome this disease. We appreciate your ongo- mine where research funds should be focused. ing support as we take these important steps forward. Support the Mitochondrial Standards Workshop scheduled to meet in Dallas during the UMDF 2002 Symposium. The goal of the workshop is to lay a foundation for standardizing diagnostic techniques between centers. The development of a Sample Exchange Program will be discussed. The meeting is UNITED MITOCHONDRIAL DISEASE FOUNDATION part of the Laboratory Methods Committee of the Mitochondrial Medicine Society. The ultimate goal of the committee is a consensus document on laboratory methods. On another note, the National Organization for Rare Disorders has sponsored the Rare Diseases Act of The first multi-centered clinical trial (the Christini study) is imminent. Patients diagnosed with Renal 2001 which seeks to establish an Office of Rare Tubular Acidosis are encouraged to submit their Diseases at the NIH, regional Centers of Excellence, names and contact information to the UMDF to be and perpetual funding for research. added to the list of participants. This particular study will examine the usefulness of Triacetyluridine as a Although this effort is not mitochondrial-specific, we treatment for mitochondrial disease. The decision to feel it worthy of our support. Visit NORD’s website at study a small group of patients will allow the effec- http://www.rarediseases.org to read more about the tiveness to be determined quickly, thereby making it Act and how you can help. ultimately available to all mitochondrial patients.
4 Mitochondrial News Spring 2002 Ask the Mito Docs continued from page 1 the only time an elevated lac- to this statement. tate/pyruvate ratio is important Pyruvate is the normal product of mitochondrial membrane. The is when the lactate is high. glucose metabolism that is the charge created by this electric chemical interface between glycolo- potential will be used to generate THE QUESTION IS: sis (the first steps in metabolism) the high energy usable form of ener- and the citric acid cycle (the so- gy (ATP) from ADP. If skeletal muscle and cardiac muscle are becoming weaker due to called second phase). If pyruvate If the electron transport chain is cannot be properly used, due to a not working, the NADH cannot be progression of the disease, wouldn't that raise lactate and pyruvate? disorder in pyruvate dehydrogenase, converted to NAD+ (and energy, the citric acid cycle or the electron ATP, is not produced). By con- transport chain, then it will build up verting the normal intermediate RESPONSE FROM: BRUCE COHEN, MD in concentration and get turned into chemical pyruvate into lactate lactate. The "reason" for this is when (which has no role inside the Elevated lactic acid (also referred pyruvate gets turned into lactate, a human body), the body is able to to as lactate) levels in the blood are a little more energy can be produced convert all the extra NADH that is well known "hallmark" feature of through glycolosis, the first phase of accumulating to NAD+. Why is this mitochondrial diseases, however metabolism. In those with electron important? Because one step in gly- there is not a direct correlation transport chain disorders the lactate colysis (the set of reactions where between clinical symptoms (how sick is elevated far more than the pyru- glucose is converted to pyruvate) a person is with their mitochondrial vate is, and the increase in the nor- just so happens to make a little ATP disease) and the actual level of blood mal ratio of lactate levels and pyru- by converting NADH to NAD+. lactic acid. Lactic acid will also vate levels tells the doctor to suspect Remember that glycolysis does not increase in those without a mito- an electron transport chain disorder. require oxygen either. Therefore, chondrial disease in the face of seri- Regardless, until we have a better the body has developed a way, by ous illness, lack of oxygen or shock. biochemical bait, we use lactic acid converting pyruvate to lactate, to In terms of those with mitochon- levels as only one method to help us regenerate a compound (NAD+) drial diseases, there are a number of screen for those with the illness and that can then be used to tweak out a explanations why there may not be a use them as monitors of the disease. little more ATP when the electron correlation between lactic acid levels transport chain is not working or and seriousness or worsening of the THE QUESTION IS: when there is not enough oxygen illness. Remember that mitochon- around. The body has no use for drial diseases can affect the different My 21 month old son has been lactate, but this is a compensatory organs to a greater or lesser extent. suspected of having a mitochondrial mechanism to get the unusable The liver is responsible for the disorder for over a year (we are still NADH back to NAD+ which in turns majority of lactic acid production in in the process of diagnosis). Last helps generate a little more ATP. In the body, and in those with severe week he experienced extreme high doing so, however, more pyruvate is brain disease and no liver disease, temperatures for 4 days. One day his made, resulting in the lactic acidosis the lactic acid level may not be ele- temperature was 105.1. This week his situation getting worse. vated at all. When the kidney is temperature is lower than normal. A What happens inside the body functioning normally, the kidney pediatrician saw him last week and during a mitochondrial crisis or tends to "hold on to the lactic acid" found no reason for these extreme oxygen deprivation is that the ratio and keep it in the blood (and not let temperatures. He said this could be of lactate to pyruvate rises. The it escape into the urine). If the kid- an indication of the disorder -- ratio of 20:1 is what is in the litera- ney is affected by the mitochondrial that the temperature "gauge" in his ture. This would apply to CSF as disease, the lactic acid will pour into brain is now malfunctioning. Could well. I would not use this on urine the urine and result in normal levels this be true, and if so why does this however. or low levels in the blood. Infants happen? And, is this common to A few key points however: tend to run higher lactic acid levels mitochondrial disorder patients? 1. MOST medical centers do not than older children and adults. The run pyruvate correctly. Unless bottom line is that clinicians in the RESPONSE FROM: the blood is instantly depro- mitochondrial field have accepted RICHARD BOLES, MD teinized, it is not the gold stan- that lactic acid levels alone do not Body temperature control is very dard method of doing the test. correlate well with the clinical complex, with many factors con- 2. IF the lactate is not elevated, do behavior or disease state of most, tributing to high and low tempera- not bother looking at the ratio. It but not all, people with mitochondr- is not important. In other words, ial cytopathies. There are exceptions Continued on page 6
Mitochondrial News Spring 2002 5 Ask the Mito Docs continued from page 5 significant brain/neurological dis- (the speed at which food can be ease. An MRI of the brain might be turned into energy) calories is tures, including infection, hormonal indicated. reduced. During an illness, giving disorders, brain disorders, auto- supplemental sugar is usually neces- immune diseases, tumor, drug reac- THE QUESTION IS: sary. This can be given as food, a tions, etc. Body temperature is con- In a patient with mitochondrial beverage (Gatorade for example), or trolled by the autonomic nervous as an IV. Cornstarch is a complex car- system, and in some individuals an disease, does giving extra calories, in the form of glucose, extra tube feeds bohydrate, which is slowly digested abnormality in this system ('dysau- and releases the sugar over 6-8 hours. tonomia') can result in frequent high or uncooked cornstarch have any effect on decompensation due to ill- In a healthy child, starvation dur- and low body temperatures. Other ing a one or two day illness rarely signs of dysautonomia can occur in ness? Can it prevent decompensa- tion if started at the first sign of ill- causes any problems. In a child with the same individuals, and sometimes a mitochondrial disease, where the include changes in heart rate, ness, before any noticeable decompensation? caloric reserves are low and the ability breathing rate, blood pressure, to compensate for any stress is sweating, skin color/temperature, reduced, the risk of energy failure and digestion. RESPONSE FROM: BRUCE COHEN, MD with resultant serious effects is Dysautonomia has been described heightened. This is a relative risk, and in a few case reports in children with There is no single answer to this some patients are more susceptible to suspected mitochondrial disease. In question. problems than other patients. Early my personal experience, dysautono- The stomach and small intestine fluids and sugar is helpful as a general mia is not rare in children and adults break food down into fats, carbohy- rule. In children with fatty acid oxida- with probable mitochondria-related drates (sugars) and amino acids tion disorders, such as medium chain disease, especially those with mater- (protein). In a healthy person, any acylCoA dehydrogenase deficiency, nal inheritance. Disease manifesta- food eaten that is needed immediate- each illness needs to be treated as a tions tend to be intermittent, as is the ly is stored in the liver as glycogen (a crisis. These children must have IV case with dysautonomias in general. complex form of sugar) or as fat. fluids and glucose. I tell parents "do Specific findings in some individuals Protein cannot be stored and is con- not pass GO, do not collect $200..... go include migraine-like headache, verted into sugar and urea. The urea to the ER with the first sniffle." In abdominal pain, racing heart rate, is excreted in the urine. The liver can other children, everything can be apnea, hyperventilation, fainting, store enough sugar to run the body handled at home. The protocol for severe reflux, cyclic vomiting or diar- for about 12 hours. The ability to this problem should be discussed rhea, delayed gastric emptying, store fat is enormous. During times with your physician beforehand. chronic constipation, blotchy skin of starvation, whether this is volun- In some circumstances, early sugar rashes, pain, swelling, color or tem- tary or due to an inability to eat is not helpful and the perature changes in an extremity, and because of illness, we live off our viralillness itself causes the abnormal body temperature control stored sugars and fats. In the healthy decompensation. (both high and low temperatures). person, the ability to survive starva- Since fever can be a sign of a seri- tion depends on how much fat is THE QUESTION IS: ous illness, caution is prudent, espe- stored, and given a supply of water, cially in a child who appears to be ill. people can live for months. The fat I have a question regarding snor- However, in some children diag- can be mobilized and quickly con- ing. Our son is 8 years old and has nosed with dysautonomia who oth- verted into fatty acids and ketones, Leigh's. Over the past few years he erwise appear to be healthy, body which can run the body. During peri- has developed snoring which seems temperature variations (up or down) ods of fasting the blood sugar levels to be getting worse as time goes by. Is that last only minutes to an hour can can drop to very low levels, but the this common? We know that it is not be ignored. However, first it is body can still survive as long as it can really a good thing for anyone to important that a knowledgeable produce and use those fatty acids snore and were a little worried that physician establish the diagnosis of a and ketones. his snoring is so loud and frequent. dysautonomia and rule out other In many mitochondrial patients causes of an abnormal body temper- there is an inability to store or access RESPONSE FROM: ature. any stored sugar, and an inability to RICHARD BOLES, MD In rare cases, very high body tem- convert fat into ketones, or an inabili- Hypotonia (decreased muscle peratures (about 106 and higher) can ty to use the fatty acids and ketones. tone, often part of mitochondrial dis- cause brain damage. This rare situa- Because there is a relative block in ease) of the muscles comprising the tion usually occurs in children with metabolism, the ability to process airway can result in narrowing of the
6 Mitochondrial News Spring 2002 airway during sleep. If this interferes individual. My theory is that anyone smoking come up for all kids. These with breathing it is called "obstruc- can get migraine for a variety of two substances can worsen mito- tive sleep apnea," and can present as reasons, and some degree of mito- chondrial problems. Lack of sleep excessive snoring, especially if the chondrial dysfunction increases the can trigger migraines, seizures and patient is awakened multiple times probability. fatigue. during the night. In some cases, However, whether due to mito- There are management issues there is a decreased amount of oxy- chondrial dysfunction in whole, that crop up as well for those those gen available for the body and seri- part, or not at all, migraine responds young women that are bed bound; ous complications can result. In to many of the same treatments, in hygiene issues surrounding the addition, Leigh disease can involve my experience. In "mito" families, menses are difficult to handle. I brain stem function and cause apnea fasting avoidance with frequent have had two patients that have by other mechanisms. Thus, complex carbohydrate snacks is undergone hysterectomy as a mea- although snoring is common and often helpful. sure to handle this problem. The usually benign, excessive snoring use of birth control pills for the pur- should not be ignored but should be THE QUESTION IS: pose of managing heavy periods can evaluated by a physician, especially In your experience, how do girls be considered in those without an Ear, Nose and Throat (ENT) spe- going through puberty tolerate it. If strokes or complicated migraines. I cialist. Various treatments are you could speak to Leigh's Disease advise against birth control pills as a appropriate in some cases. more specifically I would appreciate routine form of contraception, it. Are there worsening of symptoms, because of the concern over strokes, THE QUESTION IS: progression etc.? although I know of no literature to Can you please explain causes show it is more dangerous in per- and symptoms of complex migrane RESPONSE FROM: son's with mitochondrial problems. with auras. I get symptoms without BRUCE COHEN, MD (For those women that are already pain, then other times a headache on them when I do their evaluation, I have not found more mitochon- I do not have them stop unless there will come on with no warning at all. drial problems related to the years of Is this all part of the mito? are problems). puberty than any other particular A little off the topic: for the timespan in a person's life. Children affected (mitochondrial) women RESPONSE FROM: with Leigh disease can deteriorate at RICHARD BOLES, MD entering menopause, I advocate any time and I have not observed estrogen replacement as long as they Despite the fact that migraine is this point in a person's life to be have discussed all the aspects with very common (it is seen in 10% of all more metabolically unstable than their doctors. people), its causes are not well other times. Having answered part known and are the matter of much of the question, I will bring up a few scientific debate. Many, but not all, more points: The issues surround- Special thanks to the following migraine sufferers will occasionally ing puberty needs to be considered doctors who have graciously or always experience an aura before separately for those children that taken time out of their busy the headache and nausea appear. are bed bound because of their ill- schedules to provide responses Aura can also occur without pain - ness and those that are functioning to the Ask the Mito Doc this is still migraine. The aura is best normally (and everyone in between questions from our defined as a sensory disturbance, these extremes). UMDF members: and can involve any sense. Some However, the growth that occurs examples are flashes of light, hearing during puberty can cause other Bruce H. Cohen, M.D., The everything as if in an echo chamber problems. Scoliosis, or curvature of Cleveland Clinic Foundation, OH and an unusual taste. the spine, often becomes much Richard G. Boles, M.D., Patients with "mitochondrial dis- worse in any person with a muscle Children's Hospital of Los ease" often complain of migraine. disease, during growth phases. This Angeles, CA Frequently, so do their matrilineal affects children that are not mobile, (maternal) relatives. In these family such as those that are not able to Salvatore DiMauro, M.D., members, migraine can occur even walk or sit independently. Scoliosis Columbia University, NY in the absence of other problems. can lead to pulmonary problems, D. M. Turnbull, MD, PhD, Since migraine is so common over- such as aspiration and pneumonia, University of Newcastle, England all, it is difficult to know for sure that which can be fatal. John Shoffner, M.D., Horizon it is related to mitochondrial Puberty is a time for exploration Molecular Medicine, Atlanta, GA disease/dysfunction in any given and problems such as alcohol and
Mitochondrial News Spring 2002 7 Mitochondrial Standards Workshop-- ANNOUNCEMENTS Laboratory Methods for the Diagnosis of Mitochondrial Disease CORRECTION Sponsored by the Mitochondrial Medicine Society, In the last issue of Mitochondrial News, UMDF reprinted an Mitochondria Research Society, UMDF, Mitochondrial article on SSI and Self-Settled Trust: The Rules are Finally Interest Group, National Institute of Standards and Clear. The article was taken from the SNAP (Special Needs Technology, and CDC Advocate for Parents) Report, 2001 - not SWAP. We apolo- gize to our friends at SNAP for the mistake and thank them Reaching a Mitochondrial Diagnosis is many times a once again for sharing the article with our membership. Comedy of Errors at times for the patient seeking a diagnosis but there is hope on the horizon. During the Mito Dallas 2002 Conference, a committee of four mito- FOR PHYSICIANS chondrial specialists - Drs. Robert K. Naviaux, Steve Keystone Conference on Mitochondria and Pathogenesis at Zullo, Keshav Singh, and Georgirene Vladutiu - have Copper Mountain, Colorado, April 6-11, 2002. For more organized a Mitochondrial Standards Workshop. The information, visit www.keystonesymposia.org. workshop will bring together experts in the clinical and laboratory diagnosis of mitochondrial disease for dis- RESOURCE cussions that will lead to the development of an effec- The National Institute of Neurological Disorders and Stroke tive Sample Exchange Program, and ultimately in the has a publication full of resources and can be ordered on line publication of a consensus document on Laboratory or browse the site for info at Methods for the Diagnosis of Mitochondrial Disease as http://www.ninds.nih.gov/find_people/organizations_index.htm a state-of-the-art source of protocols and standards in mitochondrial diagnosis. The Dallas Workshop will be the second meeting of NEWSLETTER DEADLINES the Laboratory Methods Task Force of the We want to hear from you. If you are holding a fundraiser or Mitochondrial Medicine Society (MMS). The first meet- have ideas for future articles, please note the following ing was at the Mitochondria 2001 conference in San deadlines: Summer 2002 Issue - June 1, 2002 Diego. The Task Force has six committees, each com- deadlines: Fall/Winter 2002 Issue - September 1, 2002. prised of experts from the medical disciplines that are All items will be considered and printed upon approval. fundamental in the evaluation of patients with suspect- ed mitochondrial disease. The committees are: 1) Respiratory Chain Biochemistry, 2) Immunodiagnosis, 3) DNA, 4) Pathology, 5) Imaging, and 6) Non- Respiratory Chain Biochemistry. The workshop will be a one-day event and will include speakers with exper- tise in molecular biology, genetics, biochemistry, neu- rometabolic imaging, virology, and AIDS. The Official Airline of the UMDF Workshop will be divided into 4, 2-hour scientific ses- ‘Vacation Toward a Cure’ Raffle sions, and will end with a Panel Discussion, with ques- tions and answers from the audience. The Panel Dreaming of a family vacation to Disney World in Discussion will start with a brief summary of the Task Florida? UMDF would like to give you a chance of Force committee recommendations for sample selec- making that dream a reality. During the Dallas 2002 tion, distribution, monitoring, and budget requirements Conference, UMDF is launching a 'Vacation Toward a of an effective Sample Exchange Program. Cure Raffle' which will continue throughout the sum- Participating laboratories and imaging centers will be mer and end in the Fall of 2002. The winner will be identified. In this way, laboratories and imaging centers announced during a wine tasting dinner hosted by the around the world will be able to compare results New York Metro Chapter of UMDF (Winners do not obtained from identical samples, and validate the need to be present to win). assays, objective scales, and evaluation protocols that For more details on the raffle, please contact the are currently in place. New York Metro Chapter at [email protected], UMDF will summarize the workshop proceedings in the national office at 412-793-8077 or visit the UMDF the Summer 2002 issue of the Mitochondrial News. web site at www.umdf.org. For all of those medical professionals who are partici- Special thank you to American Airlines and Disney pating in this workshop, thank you. The adults and fami- World for sponsoring the raffle! Also to Joe Rice, lies, who must trudge along the diagnostic trail, appre- president of the NY Metro Chapter, for taking charge ciate your commitment to clearing the path for answers. of the raffle, adding extra fun for conference attendees and raising funds to battle Mito!
8 Mitochondrial News Spring 2002 5th International Symposium on Mitochondrial Disease June 7-9, 2002 • Westin Galleria, Dallas, Texas 1:30 pm - 3:00pm Session III SCHEDULE Track 1 - Medical Neurological Involvement in Mitochondrial Disease FRIDAY, JUNE 7 Bruce Cohen, M.D., Chief Pediatric Neurology, The Cleveland 9:00 am - 2:00 pm Clinic Foundation, Cleveland, OH Registration and Networking by Symptom Ophthalmological Complications in Mitochondrial Disease (Breakfast and lunch on own.) Anne B. Fulton, M.D., Harvard Medical School, Boston, MA 10:00 am - 12:00 pm Track 2 - Support Hearing Loss, Everything About it, Plus... CranioSacral Therapy Hits Mainstream Medicine Ruth Ilean Fox and Alice Adams Andrew Fryer, M.D., Sally Fryer, P.T. 2:00 pm - 3:30 pm 3:00 - 3:30 Break (Choose one of three) 3:00 - 5:00 pm Mito Basics for the Newly Diagnosed Review of Scientific Program; Dr. Bruce Cohen, The Cleveland Clinic Foundation, OH Networking and Chair Massages; Stimulating Cognitive Development and Sensory Integration The Doctor is In: Sign up on site to ask a question of a mito specialist. Dr. Michelle MacAlpine and a panel of pediatric therapists 6:30 pm For Adults Only! Cocktails Dr. Sandra Sirrs 7:00 pm 4:00 - 5:00 pm Dinner by Direction - Enjoy a TexMex Buffet with those who live UMDF Annual Meeting for Members near you. 6:30 - 7:00 pm Playful Living - Dr. Lawrence Cohen, a nationally recognized child Cocktails development expert and family advice columnist for the Boston 7:00 - 10:00 pm Globe presents a fun and lively evening full of practical words of Banquet and Concert for Physicians and Families wisdom The famous Turtle Creek Chorale will honor us with an amazing performance SUNDAY, JUNE 9 8:00 - 9:00 am Continental Breakfast and Fundraising 101 SATURDAY, JUNE 8 Dr. Georgette Demes, UMDF Director, Programs and Development 8:30 - 9:20 am 9:00 - 11:00 am Continental Breakfast and Speaker - When You Know More than Fundraising, Chapter and Support Group Development and Your Doctor Raising Awareness David Moore, M.D. Cardiologist and Amy Moore, R.N. Pain Research is the path to a cure, and to fund research, we need to Management Specialist raise money, raise awareness and network. Practical ideas you 9:30 - 11:00 am can take home from those who have done it. UMDF's own Session I Dr. Georgette Demes and Kara Strittmatter as well as other Track 1 - Medical families and Chapter leaders will lead this conversational and Introduction to Mitochondrial DNA and Mitochondrial Disease interactive session. John Shoffner, M.D., Horizon Molecular Medicine, Atlanta, GA Networking time is available on the 3rd floor foyer until 12 noon. (Note: this session is more detailed than the basic course on Friday; those planning to attend this course who have not heard the Mito HOTEL RESERVATION INFORMATION Basics course should attend the Friday session by Dr. Cohen) The Westin Galleria Dallas, 13340 Dallas Parkway, Dallas, TX 75240 Nutritional Aspects of Mitochondrial Diseases Rates: $140 single/double per night. Specify UMDF Symposium when Fernando Scaglia, M.D., Baylor College of Medicine, Houston, making reservations - 1-888-627-8536 TX., Kendall Brown, M.D., North Texas Children's Hospital, Dallas, TX TRAVEL Track 2 - Support American Airlines is the official airline for the UMDF Mito Dallas Estate Planning for Families with Special Needs Symposium. American is offering a discount on fares booked through Ben Franklin, CLU, CHFC, CFS, RHU 800-433-1790. You must mention account #A1162AL. UMDF symposium 11:00 - 11:30 am attendees will get a 10% discount off any published fare for tickets Break reserved 60 days in advance and 5% discount within 60 days of travel. 11:30 am - 12:25 pm Session II SCHOLARSHIPS Track 1 - Medical For those experiencing financial hardship, a limited number of funds to Cardiac Involvement in Mitochondrial Diseases offset part of the cost of attending the symposium are available. To Jeffrey Towbin, M.D., Baylor College of Medicine, Houston, TX inquire, call UMDF at 412-793-8077 and ask for Toni. Endocrine Involvement in Mitochondrial Diseases Charles A. Stanley, M.D., Children's Hospital of Philadelphia, PA CANCELLATION POLICY Track 2 - Support If cancellations are received in writing by June 3, the registration fee will Practical Tools for Spouses - Jane Clarke McManus, M.A., L.P.C. be refunded. Refunds will not be processed until after the conference. 12:30 pm - 1:30 pm Lunch with Q & A. Mitochondrial Expert Panel: Drs. Richard CHILD ATTENDANCE POLICY Kelley, Bruce Cohen, Georgirene Vladutiu, John Shoffner, Children will not be permitted at conference sessions. The conference is Fernando Scaglia, Carol Greene, and Nancy Kennaway intended as a professional and educational weekend for adult participants. UMDF Mito-Dallas 2002 Symposium Registration Form
Name ______
Mailing Address ______
City ______State ______Country/Province ______Zip______
Daytime phone ______E-Mail ______
*One form per registrant. Please copy this form for additional attendees.
Track options: Friday 2:00 pm Session (choose one) Mito Basics - Dr. Cohen Adults Only! - Dr. Sirrs Stimulating Cognitive Development and Sensory Integration - Dr. MacAlpine Saturday Sessions (choose one per session) Session 1: Track 1 Medical - Mito Basics and Nutrition Track 2 Support - Estate Planning Session 2: Track 1 Medical - Cardiac and Endocrine Track 2 Support - Practical Tools for Spouses Session 3: Track 1 Medical - Neuro, Ophth and Clinical Trials Track 2 Support - CranioSacral Therapy (While you can change your choices at the symposium, we cannot guarantee space will be available.) Please select all of the following that apply: I will attend the session on Hearing Loss on Friday, June 7 at 10 am. For the Friday night banquet, I prefer a vegetarian meal instead of the beef tenderloin that is being served. Dietary restrictions for all meals - please specify: ______ I require assistance due to a disability. Someone from the conference will contact me. Fees per person: (meals included except Friday lunch.) UMDF Members (join below if not already a member) $150 UMDF Membership Annual Dues $40 Non-UMDF Member $200 All registrations sent after May 15 $225 Total enclosed ______Payment: Mail check with form payable to: UMDF, 8085 Saltsburg Road, Suite 201, Pittsburgh, PA 15239
Credit Card: Visa MC Name on card ______(Please Print Clearly) Card Number ______Exp. Date______
Signature ______(not valid without signature) Credit card payees may fax their form to UMDF at 412-793-6477 (fax). Once faxed, DO NOT mail the original registration form.
The UMDF Scientific Meeting, in partnership with the University of Texas Southwestern Medical Center at Dallas, will run from June 6-9, 2002 at the Westin. Medical professionals can contact the UMDF at 412-793-8077 to obtain the registration brochure for the scientific meetings or visit www.umdf.org Reaching a diagnosis of Mitochondrial uncommon disorder. Sometimes objec- Cytopathy at any age is akin to thumbing Reaching a tive test results may be discounted through the titles of William Shakespeare's Diagnosis of Mito because they are only slightly abnormal plays. or do not show an "expected" pattern. In "King Lear" the King is worn out, by Jean Shepherd, Courtenay, Like the "Merchant of Venice," the doc- tired, and looking for assurances of love. British Columbia, Canada tor has financial pressures which don't Mitochondrial patients are worn out, tired, allow for the time necessary to deal with and searching for an answer to what is doesn't want to share this with others patients with problematic symptomatol- causing their myriad of symptoms. because he feels shamed, and guilty, and ogy. Many patients have received a "diffi- They trek from doctor to doctor build- grossly misunderstood! cult patient" label because they are too ing up several different diagnoses: the Diagnosing this patient has become a involved and consume too much time! nephrologist finds Renal Tubular Acidosis; "Comedy of Errors" with the patient as the What is so devastating for the patient the gastroenterologist claims Irritable unwitting and unwilling victim. Doctors is the cost. The financial drain from Bowel Syndrome; the ophthalmologist have discounted patients' subjective trekking miles to see a new specialist, the sees Chronic Progressive External descriptions of symptoms, preferring to delay in starting treatment, and the Opthalmoplegia and the neurologist look for the commonly found diagnosis increasing sense of isolation all contribute comes up with Multiple Sclerosis, which such as menopause or improper diet and to the capricious nonsense of a doesn't quite fit the Multiple Sclerosis to believe the objective test results rather "Midsummer's Night's Dream." symptoms! All send their reports to the than to admit they just don't know or Even the doctors who specialize in family doctor with their diagnoses. The haven't considered the possibility of an Mitochondrial Cytopathies can't agree family doctor is confused and doesn't upon diagnostic methods and subsequent have the information necessary to put the treatment! The frozen versus fresh tis- pieces of the puzzle together; the patient sue muscle biopsy issue is hotly debated is frustrated, because all the different among doctors. How confusing for a diagnoses don't make sense. patient! Hopefully the rationale for diag- Sometimes the experience of pursuing nostic methods and treatment can be diagnosis is like "Much Ado About clarified soon, thus allowing the consis- Nothing." Frequent negative findings in tent education of medical students in the tests lead a doctor to deduce that the identification and treatment of patient must be malingering! Mitochondrial Cytopathies. The patient may be labeled with a psy- The length of the path to diagnosis has chiatric disorder diagnosis because there been likened to "Twelfth Night" with the are so many diverse symptoms and noth- nights counted in years. Some patients ing to substantiate their existence: the have been lucky to get a diagnosis after search for diagnosis is effectively halted. ten to twelve years. Recently, with the A diagnosis of a psychiatric disorder is rise in awareness of Mitochondrial the most soul-destroying and confidence- Mito Adults Corner Disorders, some patients have been able shaking experience; it plunges the patient The Mitochondrial News is pleased to reduce the "nights" of waiting. into a depression, which effectively gives to offer a new column that will Diagnosing an adult, as opposed to a credence to the diagnosis. address adult issues - issues that child, is more difficult because the aging The textbook description of a psycho- will benefit not only adults but also process complicates the picture. A child somatic psychiatric disorder mirrors that parents caring for children affected with night sweats can't have menopause! of Mitochondrial Cytopathy. A family doc- with mitochondrial disease. A favorite Shakespearean play is tor, who knows the patient well, should be The articles will be written and "As You Like It." Lucky is the patient who unwilling to stop the search because he submitted by various volunteers. has one doctor who believes in him, will knows that this symptomatology has not As a first article, Jean Shepherd and listen to him and will be willing to accept been adequately explained. One message committee members Kathy Graff, Mitochondrial information and follow the that patients would like to get across to Denise Gregorich, Patsy Ann Kniel, advice given in the information. doctors is that exploring physical causes Tara Collier, Brenda Shanley, and A source of excellent information is should be ruled out before psychiatric Melissa Nixon, provide an interest- available on the UMDF website causes are investigated. ing comparison to help those seek- "Mitochondrial Cytopathy in Adults: When the patient feels that doctors ing a diagnosis. We thank this new What we Know So Far" by Dr. Bruce have given up on her, life is like being on committee for their willingness to Cohen and Dr. Deborah R. Gold. This the lonely island of "The Tempest." Alone, share experiences and ideas with comprehensive article covers the aspects worried, and feeling misunderstood, the our readers. Any adult interested in of symptoms, tests and treatment; patient is often unable to seek out the serving on this committee please patients should give it to all their doctors. company of others for support. A patient, contact the office at 412-793-8077. Travelling along the diagnostic trail is eas- who is diagnosed as a hypochondriac, ier with a guidebook in hand.
Mitochondrial News Spring 2002 11 Over $140,000 Raised to Benefit the 2002 UMDF Mito-Dallas Symposium - the Largest Single Fundraising Event yet! Fundraisers Stage lights, a red carpet, and a bright yellow new VW Beetle greeted approximately 350 guests as they arrived at the historic Lakewood Theater on February 2 for the "Mito What? Party! - Music, Mystery and Magic," benefiting Samantha Stahler - A True the United Mitochondrial Disease Foundation's Fifth International Symposium, to be held at the Westin Galleria June 6-9, 2002, in partnership Inspiration! with UT Southwestern Medical Center. Event chairs were Jane Clarke McManus, grandmother of eight-year-old Mary Quincy Parsons, and Ms. McManus' daughter, Kathryn Parsons, mother of Quincy and a co- founder of the Foundation. Music was provided by the Encore! Group for The Turtle Creek Chorale and by Miss Texas, Stacy James. One of the big mysteries for the evening was solved with the announcement of the winner of the new Volkswagen Beetle, donated by The Volkswagen Store of Richardson and Hiley Volkswagen of Arlington. Magic was provided by a troupe performing card tricks, pantomime, and fortune telling. Samantha continues to amaze us! The 2002 symposium promises to be the best conference yet and the Mito In honor of her cousin Bobby What? Party's success will undoubtedly help the conference planners, and Arnold, Samantha asked her friends UMDF, keep such a promise. Special thanks to the many underwriters of the to donate money to UMDF in lieu of Mito-What? Party! 2002: Pat and W. Dan Wright, TXU Communications, Joy birthday presents this past Spring. and Craig Lentzsch, Lester Levy, NCH Corporation, Risa and Dr. Jay Bender, She didn't stop there - this past The Hoglund Foundation, Marsha and Dale Clark, Sally and Forrest Hoglund, Christmas, Samantha (with the help Karen and Les Alberthal, The Mike A. Myers Foundation, Nancy and Randy of her mother, Debbie) baked 96 Best, Kay and Elliot Catarulla, Emily and David Corrigan, Linda and Hal dozen cookies and sold them to ben- Firlotte, Locke Lidell & Sapp, LLP, Mary Hodge, Anne and Bill Montgomery, efit UMDF. According to Debbie, North Texas Spine Care, Southwestern Medical Foundation, Medora and Bill "not only did people buy the cookies White, and Robert and Jack Williamson. but most donated above and beyond Well done Kathryn Parsons and Jane Clarke McManus - we are all looking the cost of their order ...We are very forward to thanking you in person in June at the conference. proud of her and hope others will be inspired by her efforts." Samantha is already making plans for another fundraiser in the Spring. You Go Samantha!
Amanda, Burley, Kip and Zoe Wiffle ball Dickerson raise $711.10 by operating tournament raises the "Deposit Bottle and Can" trailer at $865 in honor of Austin S. Manz of the Dover, MA, transfer station. Finleyville, PA Thank You!
The Billy Hacket Open raises $950 in memory of Kayla Elizabeth Naughton in Ballston, NY.
12 Mitochondrial News Spring 2002 They Came . . . They Ran . . . They Raised Over $11,000 By Becky Senecal, A.W. Hastings & Co. Fundraisers
Participants enjoy the opportunity to walk, raise funds and awareness, and to support the UMDF mission A beautiful fall day welcomed our 2nd annual Mito-What? sponsored by Morgan Kozuch is enjoying the 1st A.W. Hasting's & Co and organized through the efforts of Jackie Tyler, mother Ever Mito-What? Margaritaville Cruise with her sister, Khristina and of Emily Tyler. Held on October 21st at Baypath College in Longmeadow, MA, Jennifer Reed. The event raised over 300 walkers and runners came out to show their support. Participation $3,500 and was so successful that a doubled in size from the previous year. The outpouring support and partici- second is planned for 2002 as well pation from the community continues to amaze our team of race organizers. as the 7th annual Kozuch Golf Seeing how participation doubled in just one year's time, we're hoping this is Outing and auction in July of 2002. a trend that will continue each year. This only fuels our aspiration to contin- ue holding this event every year, which is why we are already gearing up for 2002. We truly want to thank everyone for making this a huge success!
Hearts Full of Hope Cookbook Sales Closing in on $30,000! Hearts Full of Hope-Recipes Gathered with Love Cookbook was a hot item throughout the Holidays and a reorder has already been placed. The national office has raised over $7,300 and the chapters have collectively raised over $22,000! Tishcon Corporation has generously offered to assist by funding one half the cost to reprint 1,500 more books which means more profit to support the UMDF mission! Get your orders in now for Easter, Mother's Day and any special birthdays that you have coming up! The national office would like to recognize Jennifer Cooper of Milford, Ohio for being one of our top cookbook sellers. She sold over 80 cookbooks. Jennifer held a fundraiser in May of 2001 with a goal of $10,000 and she was just a little shy of that goal. However, her combined total from the fundraiser and the cookbook sales has taken her over the 10K mark. Well done, Jennifer - Madison and Molly are very proud of their mommy and so is UMDF. Great Grandmother, Evelyn Perry This special cookbook which has 602 recipes submitted by our very own (on right) of Mentor, OH, and her mito families, friends and relatives across the states. Some recipes are in honor friend Mary Lou Hawkins sold Christmas tea towels in honor of or memory of loved ones. The spiral bound, laminated hard cover book Evelyn's great granddaughter, Emily includes over 100 inspirational sayings, information about mito disease, Plesko and raised $150 and then and each category divider has a special poem. held a raffle in December for Emily To order your cookbook(s), please contact the chapter nearest you or the and raised $1,500 more to benefit national office at 412-793-8077. The cost is $15.00 (plus $2 shipping and han- UMDF. Well done ladies! dling). Order forms are available via the UMDF web site or the national office.
Mitochondrial News Spring 2002 13 Coins for a Cure Fundraisers Continue to Spread In Monroeville, PA, "Coins for a Cure" raises over $1,400 in January 2002. Fundraisers UMDF Employee, Sandy Turi, organized the fundraiser at St. Bernadette Catholic School in memory of Gina Marie Mohan. Sandy's children attend the school and Gina, Chuck Mohan's daughter, also attended St. Bernadette. Gateway High School's Leo Club volunteered their time to count all the Linda Sawyers earned $100 for coins - Thanks! volunteering over 25 hours of service in Also in January, The Solomon Schechter Day School, in Marlboro, NJ, her community (many of those hours raised $1,036 in honor of Zachary Friedberg. were donated to a golf outing in August Again, just imagine if 20 which benefited UMDF). In honor of her more schools across the beautiful niece, Baylee Jo Thompson, United States would join in the Linda donated her $100 to UMDF. "Coins for a Cure" challenge! Thanks Linda!
Chuck and Adrienne Mohan Capucine Zelenko turned TWO and to present a plaque to Sr. Carol honor her big day, friends and family Arch to acknowledge St. donated $190 to UMDF. Happy Birthday Bernadette’s commitment to Capucine and Thank You! continuing the Coins for a Cure as an annual event. In honor of Cameron Tritsch, of Georgetown, KY, Sheri Martin held a Pampered Chef Product Fundraiser and donated $82.80 to UMDF. Tracy Martin (Pampered Chef Kitchen Consultant) and Sheri Martin both work for Cameron's Mrs. Stefanide’s fourth dad, Dr. Scott Tritsch. Thank you ladies! grade class at St. Bernadette won a Popcorn/Movie party for Cans for Ashley continues to raise funds raising the most money. and awareness in honor of Ashley What a great group Anderson of Fort Smith, Arkansas. of kids. $1,192.35 was raised in the year 2001.
Upcoming Fundraising Events mark your calendars . . .
March 30, 2002 —Southern California Chapter Golf Outing, El Dorado Golf Course, Long Beach, CA. For more information, contact the chapter at [email protected]. April 6, 2002 — 3rd Annual Shelly's Heroes 5K and 1 Mile Run/Walk and Blosky Blast-Off Tot Trot in Hatfield, PA (near Philly). For more information, contact [email protected]. 2nd Annual Matthew Dudgeon Memorial Walk and Dinner Dance will April 19, 2002 — Casual Day for Kristen. Employees at the Great River Medical Center be held on May 11, 2002. The Walk is in Burlington, IA, will help raise funds by paying for the opportunity to dress 4 miles on the Heritage Trail in Chester, "casual" for the day. Janelle McGuire, Kristen's mom, will also display UMDF NY and the The Dinner Dance takes materials and information on mitochondrial disease from April 1 through April 19. place at the Owne Murphy Inn, June 1, 2002 — Ohio Chapter's first annual 5K Run/1Mile Run/Walk - One Step Closer Goshen, NY. Proceeds to benefit the UMDF and the Matthew Dudgeon to a Cure in Cleveland Heights, OH, at Forest Hills Park, Picnic Shelter 2A and 2B. Memorial Fund. For more information, For more info, contact [email protected]. contact Gina Dudgeon at 845-469-5702 or visit http://themattyfund.org. For more information on these events or if you have a new event coming up, please contact the UMDF office at 412-793-8077 or via email at [email protected].
14 Mitochondrial News Spring 2002 ARIZONA CHAPTER UMDF Chapter Activities In October, the Arizona Chapter celebrated their 2nd Annual Mitoween Party with children of all Bill Hodges, Kelly Hujarski, Violet ages (including Barb Tucker in her Ippolito, and Molly Heinrich. The mad scientist costume with smoking Ohio Chapter has raised over $8,500 beakers!). Lots of goodies, games, in cookbook sales - Great Job!!! pumpkins, prizes, tricks and treats had by all! Kiawah Island Marathon On December 15, 2001, Jeff Gallop (along with the help of Lynn, Ned and Jack Gallop) raised over $6,800 in honor of his "little buddy Cooper Adelstein" by running a marathon and collecting sponsors. Jeff com- pleted his first marathon in 4 hours be speaking on the genetics and bio- and 13 minutes and was completely chemistry of mitochondrial disor- motivated by thoughts of Cooper. He ders. Each meeting is the 3rd noted that his "run paled in compar- Thursday of the month (call for loca- ison to the race that Cooper endures tion & times). Seating is limited; each day." Kevin was touched by his please contact Karen Lipps at 623- friend's compassion to help Cooper, 694-5151 or [email protected]. Top seller of the UMDF cookbook The 2nd Annual Holiday Party for Arizona is Mr. John Sheedy who was a beautiful event made entirely sold 30 books! possible by the generosity of Thom and Tracey Montgomery. The Montgomery's opened their home OHIO CHAPTER complete with a Chef , Santa and his reindeer (also known as, Spanky the Please join the Ohio Chapter for donkey). its first annual 5K Run/1Mile Many thanks to all the folks who Run/Walk - One Step Closer to a made the Mitoween and Holiday Cure on Saturday, June 1, 2002 which Party wonderful events - Thom & will include music from the Digital Tracey Montgomery, Santa Lowe and Dukes, balloon animals and crazy his Mrs. Clause (Brent & Becky), Tom hats from the Flower Clown, face & Linda Kolze and Trudie Jones. painting and more. The event will be as well as all those affected by the Over the next several months, the held in Cleveland Heights at Forest disease. It is the Adelstein's wish Arizona Chapter will be gearing up Hills Park, Picnic Shelter 2A and 2B. that someday a Cleveland Center for for the 5th International UMDF The run and walk routes will be on Mitochondrial Study will be estab- Symposium on Mitochondrial Forest Hills Park paths. Free T-shirt lished and hopes that this money will Disease. Just as an athlete condi- with every paid entry. For more make that dream a reality someday. tions him/herself for a big athletic information or to receive a registra- UMDF plans to expand the cur- event by small workouts and condi- tion form, please contact ohchap- rent research grant program to tioning over a period of months, so [email protected]. include specific goals of the Research will WE! Each of our Chapter KFC (Kentucky Fried Chicken) has Expansion Project (REP- see the Meetings from January to June will already agreed to be Title Sponsor Research Update on page 4). The include video, audio and/or for $10,000 - the committee is doing increase in grant funding allows the PowerPoint presentations from lead- an excellent job in obtaining spon- foundation to fund new areas of ing mitochondrial experts as we pre- sors and organizing the run! research in support of the REP. The pare for the next symposium! Top sellers of the UMDF cook- change will take effect in the 2003 Handouts will be available with vital book from Ohio Chapter include the grant cycle. To establish information regarding mito basics, following (30+ books each): Evelyn Mitochondrial Research Centers is anesthesia, treatments, nutrition Perry, Sheila Rady, the Adelstein one of the goals of the REP and inter- and more. In March and April, Drs. Family, Darlene Keller, Linda ests for such centers are emerging David Gardner and Gloria Yueh will Weissman, Heidi Mihalik (sold 40), across the United States.
Mitochondrial News Spring 2002 15 UMDF Chapter Activities NEW YORK METRO CHAPTER May this New Year bring the best of health and happiness to all and, through the efforts of all DELAWARE VALLEY CHAPTER those who gave so generously of Many activities continue to their time, bring us closer to a sprout up through the cure. Delaware Valley Chapter. This The chapter would like to thank past October, the "You Go Girl" the Manhattan Club, located at golf outing raised over $7,600! 200 West 56th Street, New York, NY Over 720 cookbooks were for graciously donating the meet- sold by individual chapter ing facilities for the chapter since members and at various its inception last year. events. Lisa Polsky and her The New York Metro Chapter daughter Abby sold them at has been very active during its her preschool's craft fair along first year. One of their primary with hand painted picture focuses was to educate the med- frames with angel designs. ical community about Through the efforts of Maripat Mitochondrial Diseases. The first Shelly and the national office, project involved educational mail- Tishcon Corporation has You Go Girl participants viewing UMDF video on ings to approximately 1000 physi- the 19th hole at Halligan's Pub agreed to fund one half of the cians in the tri state area. The sec- cost for a reprint of the cook- ond project was mailing donation books - which means more profit to support the UMDF Mission. Thanks request letters to the top 100 com- Tishcon!!! panies in Manhattan and the top The 3rd Annual Shelly's Heroes 5K and 1 Mile Run/Walk and Blosky Blast-Off 100 companies on Long Island. Tot Trot is scheduled for Saturday, April 6, 2002. This is a family event as well as The UMDF has a national one for serious runners. fundraiser called Hearts Full of 500 people attended in Hope. This is a cookbook that 2001 and everyone had a contains recipes submitted by wonderful time so please UMDF members and their families join us in 2002! throughout the United States. The The chapter has plans to chapter sold approximately 100 hold special meetings in books last year. 2002. Maripat Shelly is On November 11, 2001, the coordinating a meeting Chapter wrapped up its year with specifically for adults a Las Vegas raffle and a wine-tast- affected with the disease ing dinner held at Café Testarossa, and those who are care- in Syosset, NY. The dinner was givers of adults. If this is of attended by approximately 60 peo- interest to you and you live Top Left - Maripat and Pat Shelly are joined by You ple including Chuck Mohan, Mark Go Girl organizer, Jane Jacquinto with her in the Philadelphia area, Fleming, and John DiCecco of the husband, Jim, and golf participants Adrienne Mohan, national office. We would like to please contact Maripat at wife of Trustee Chuck Mohan, and Paula Quinn. [email protected]. thank them for taking the time to The chapter is also planning a meeting just for grandparents of children affect- meet with our chapter members ed - a special time for grandmas and grandpas to share their experiences and and guests. This event raised learn about the disease for their loved ones. approximately $6,500. Our chapter would also like to extend our sincerest thanks to Mr. NEW MEXICO CHAPTER Sassone of Café Testarossa for his generous donation and help in Chapter President, Laura Owen, has been working on building relation- coordinating this event. A big ships with the local MDA to increase awareness of mitochondrial disease. thank you also to Osprey Through her efforts, MDA New Mexico has chosen three children with mito- Dominion, a local Long Island chondrial disease to serve as New Mexico Goodwill Ambassadors for 2002- vineyard for the donation of the 2003. Jenevra, Bryce and Kaylee Owen (and their parents) will meet with the wines enjoyed by all. Chris, from Governor Johnson of New Mexico later this year. Building a positive relation- Osprey's Dominion and John from ship with MDA is a great way to spread the word about mitochondrial disease. Paramount Brands, a wine distrib-
16 Mitochondrial News Spring 2002 utor, were on hand to explain about the wines they were serving. UMDF Chapter Activities Two of New York City's gourmet Italian restaurants, Rossini's and Le Madri, donated consolation prizes - two $100 gift certificates. NEW ENGLAND Special thanks to both restaurants CHAPTER for their generosity! The Las Vegas Raffle included Dr. Mark Korson, three nights at the Rio Suites, (two Division of Metabolism, of which they donated) and airfare New England Medical for two. The winner of this raffle Center presents his was Barbara Bigelow from New topic "Management of Jersey. Congrats Barbara! Mitochondrial Disease" to 150 medical In 2002, the chapter is planning professionals, parents several new events: a family pic- and individuals nic, a cruise around Manhattan, affected with and a day in Atlantic City includ- mitochondrial disease ing transportation. The chapter meets six times yearly. Please visit the web site or The New England Regional Genetics Group Annual Conference on watch your mail for chapter Mitochondrial Disease was held Friday November 30th at the conference cen- updates. If you have not received ter at UNH. It was a complete success with about 150 medical professionals our questionnaire and would like and parents in attendance. Both medical professionals and families came to keep receiving updates form away with a very positive feeling. our chapter, please email, Upcoming New England Chapter fundraiser - BRUINS 50/50 RAFFLE phone or write us at The chapter has been given three dates to sell raffle tickets for a UMDF [email protected], 631- fundraiser prior to and during three Boston Bruins games. 15-20 volunteers are 862-8975 or UMDF NY Metro needed per game to sell tickets. The dates are: Tuesday, March 19 (1:30 pm), Chapter, 1 The Hunt, St. James, NY Saturday, March 30th (5:30 pm) and Thursday April 4th (11:30 am). Please 11780. We are also in need of vol- email Eileen Mitchell at [email protected] or call at (781) 595-2821 if you are unteers to help with some of these interested. This is a great way to increase awareness in the community. Thank projects. you for your support.
SOUTHERN CALIFORNIA CHAPTER
The Tenacious D Battles Mitochondrial Disease offer does not constitute the endorsement by the Benefit Concert, December 20th was a huge success. UMDF of MRM or any other vitamin company. Your The concert, which included The Naked Truckers and purchase of any vitamin is at your discretion. Spinal Tap, was held at the House of Blues on Sunset Money Banks are being designed to be placed in Boulevard and raised $38,000 for the Southern various business locations to raise funds and aware- California Chapter. Thank you Jack Black, Kyle Gass, ness. Once the design is complete, the chapter will The House of Blues and all that volunteered their time make them available to anyone interested. and effort for this memorable event. The Chapter has obtained Community Partners In January, the chapter received a generous dona- Cards with Albertson's Grocery Stores. Every time you tion of $25,000 from Paramount Studios. The dona- make a purchase at Albertson's, they will donate a tion was made possible by Jack Black's efforts in his percentage every quarter to the chapter., up to $1,800. new movie "Orange County." If you would like a card, contact 55 North Bed and Bath Shop, in Sierra Madre, is [email protected]. donating a portion of all sales to go to the Southern The Chapter's first golf outing is set for Saturday, California Chapter every quarter. The owner, Carol March 30th in Long Beach. Wehling, has already donated $200 for the months of Reminder - if you give to the United Way through October through December. Thank you Carol! your work, please review the United Way agency codes The MRM (Metabolic Response Modifiers) Vitamins provided on the UMDF web site or contact the nation- fundraiser continues. MRM is offering discount prices al office for more information at 412-793-8077. for UMDF members and a portion of all sales will be Top seller of the UMDF cookbook for Southern donated back to the UMDF. For more information, California is Kyle Avila (and his family) who sold 69 contact Sharon Shaw at [email protected]. *This books - awesome Kyle!!!!
Mitochondrial News Spring 2002 17 UMDF Chapter Activities
WISCONSIN CHAPTER
On Dec 11th the Wisconsin Chapter was blessed with a donation of $3,500 from the Kiwanis Club of Metropolitan Milwaukee Nights- part of the proceeds from the Brewfest beer-tasting event they held in November at the Milwaukee Art Center in downtown Milwaukee. UMDF was one of three charities the Kiwanis had selected to bene- fit from this fundraiser. Many thanks to all who made this possible: Dave Dobke, our Fundraising Chairperson who also happens to be a Kiwanis Club Steve Lee of Kiwanis Club on the right, Dave member, for initiating and following through on the idea, all the Dobke, UMDF Fundraising Chairperson and Kiwanis members for their efforts, and our patron/friends who bought Kiwanis member in the center, and Jim Heyer, tickets and attended! UMDF member on the left.
SUPPORT GROUPS CHAPTERS
Atlanta Area Support Group New York, Southern area Arizona Chapter Contact: Dan Dahl Contact: Beth and James DeArce President: Karen Lipps Email: [email protected] Email: [email protected] Email: [email protected] Atlanta, GA New Paltz, NY Phoenix, AZ
Australia Support Group Southern Ohio Support Group (newly forming) Delaware Valley Chapter Contact: Tara Collyer Contact: Jennifer Cooper President: Maripat Shelly Email: [email protected] Email: [email protected] Email: [email protected] Kingston, Queensland, Australia Cincinnati, OH Philadelphia, PA
Central Ohio Support Group Virginia Support Group New England Chapter Contact: Shawna Steele Contact: Shelby Hawthorne President: Bill Shea Email: [email protected] Email: [email protected] Email: [email protected] Columbus, OH Williamsburg, VA Boston, MA San Diego Support Group (newly forming) Columbia South Carolina (newly forming) (subsidiary of S. California Chapter) New Mexico Chapter Contact: Karis Mott Contact: Jen DeMeo President: Laura Owen Email: [email protected] Email: [email protected] Email: [email protected] Columbia, SC Albuquerque, NM Pacific Northwest Support Group Kansas City Area Support Group Contacts: Terri Mason & Cathy Akins New York Metro Chapter Contact: Heidi Harmon Emails: [email protected] President: Joe Rice Emails: [email protected] Emails: [email protected] Email: [email protected] Kansas City, MO Portland, OR Long Island, NY
Canada - Ontario Support Group Michigan Support Group Ohio Chapter Contact: Valerie McGarry Contact: Ann Clark President: Jennifer Lyman Email: [email protected] Email: [email protected] Email: [email protected] Toronto, Ontario, Canada Detroit area, MI Cuyahoga Falls, Ohio (Cleveland area)
Tri-State Mitochondrial Support Group Western PA Support Group (newly forming) Southern California Chapter Contact: Andrea Gropman, M.D. Contact: Tracy Lengyel President: Sharon Shaw Email: [email protected] Email: [email protected] Email: [email protected] Bethesda, MD Pittsburgh, PA Orange, CA (Los Angeles area)
New Groups are trying to form in Illinois, Texas New York, Western area and Northern California. Anyone interested in Wisconsin Chapter Contact: Angela Geising these areas or wish to start a group in President: Anne Juhlmann Email: [email protected] another area, please call us at 412-793-8077 Email: [email protected] Buffalo, NY or email at [email protected] Milwaukee, WI
18 Mitochondrial News Spring 2002 SPONSORING $300 - 499 Thanks To Our Contributors In Honor of Cooper Adelstein Daryn, Kevin and Cooper Adelstein The United Mitochondrial Disease Foundation wants to thank the many people who have Dr. & Mrs. Gerald Adelstein made contributions that will support our initiatives. 10-27-01 to 2-25-02 In Honor of Ashley Anderson Randall & Sandra Anderson In Memory of Gina Marie Mohan In Honor of Chad Cooper BENEFACTOR $10,000 + In Memory of Andrew David Bishop John A. DiCecco J C Sales In Honor of All Affected by Mitochondrial Mr.& Mrs. David F. Bishop Ron & Donna Miklos In Honor of Madison & Molly Cooper Disorders In Memory of Cody Thomas Bracken Springs Blessings Fund Jennifer Cooper Paramount Pictures Group Crespi Mothers Golf Club St. Bernadette Catholic School In Memory of Heidi Marie Daniel House of Blues Entertainment In Honor of Hannah & Emma Bruder In Honor of Emma Grace &Thomas Mark & Lisa Downey In Honor of Robert "Bobby" Arnold, Jr. Marlene & Howard Novasel Christopher Montgomery Norma Daniel Gibson Premier Restaurant Management In Honor of Jordan & Arielle Cohen Thom & Tracey Montgomery In Honor of Erik & Juliana DeArce In Honor of Duncan Bender Judy & Sandy Shifrin In Memory of Philip Neff Mr.& Mrs. Paul DeArce Dr. Jay & Risa Bender In Honor of Madison & Molly Cooper John & Robin Roberts In Honor of Christopher Dickerson In Honor of Sylvie Lammert Geoff Hammerle In Honor of Carly Platt Town of Dover Warren & Kathy Lammert In Memory of Heidi Marie Daniel Stan & Carole Davis In Memory of Tyler Riff Ferguson In Support of the UMDF Dallas 2002 KPMG LLP In Honor of Emily Plesko Mr.& Mrs. Maury and Barbara Riff Symposium In Honor of Jessica Della Zanna Debi Miklos Todd & Silvia Riff Hoglund Foundation Tony & Karen Della Zanna In Honor of Paul Shubeck In Memory of Lori D. Hullinger Craig R. & Joy Guidry Lentzsch In Memory of William T. Dickerson The J. P Morgan Chase Manhatten Jordan Evangelical Lutheran Church Lester A. Levy Mrs. Carolyn Kirkpatrick Foundation In Honor of Zachary & Samuel Juhlmann TXU Communications In Honor of Brianna Dobke In Honor of Mason Shuck Mr.& Mrs. John Fischer W. Dan & Patricia B. Wright Pamela & Dave Dobke Jerry C. & Bernita L. Shuck Mrs. Mary P.Fischer In Memory of Bridget Flanagan Fanoe In Honor of Andrew Uhrman In Honor of Rachel Kindbom PATRON $5000 - 9999 Catherine, Nick & Aengus Fanoe Morris & Jeannette Bir Sharon & Chris Kindbom In Honor of Kristen A. Charleston In Honor of Rachel Kindbom Larry & Tracie Kugler In Honor of Savannah Lipps Newly Wed Foods, Inc. Ryan Homes In Support of the UMDF Dallas 2002 Karen Lipps In Honor of Max Dahlerbruch In Honor of Austin Manz Symposium In Honor of Austin Manz Virginia Friedhofer Charitable Trust S K C Inc. & Employees Mr. & Mrs. Lester M. Alberthal, Jr. Todd and Jean Manz In Honor of William "Bill" Evans In Honor of All Affected by Mitochondrial Nancy Kemper Best & Randy Best In Memory of Ryan Meade Dr. Joan & Bill Evans Disorders C. Ray & Associates, Inc. Target Group 192- Illinois, Wisconsin In Honor of David Hefferon Mr. Thomas M. Hardulak Mr.& Mrs. Elliot Cattarulla and Missouri Elizabeth and Thomas Hefferon Joseph Kindberg Emily & David Corrigan In Memory of Kyle Christopher Meyer In Memory of Gina Marie Mohan In Memory of Kayla Elizabeth Naughton David & Mara Deniger Mr. & Mrs. Russell Meyer G. Kidd, Inc. Eric Delnicki Mary H. Hodge In Honor of All Affected by Mitochondrial In Support of the UMDF Dallas 2002 In Honor of James Owens Dean & Linda Linderman Disorders Symposium Amanda & Tom Owens Locke, Liddell & Sapp, LLP Ms Christina Kay Forrest & Sally Hoglund In Support of the UMDF Dallas 2002 Kay Moran McCord In Memory of Gina Marie Mohan NCH Corporation Symposium Mr.& Mrs. William R. Montgomery Int'l Brotherhood of Electrical Workers In Memory of Tjallingh Onno Pieter Barry & Suzanne Adamson North Texas SpineCare, L.L.P. Charles & Adrienne Mohan Roorda Jerry R. Barshop, Investments R & R Industrial Supply Rand Wortman Peter and Geertje Roorda Dr. C.R. & Rose Cain Southwestern Medical Foundation In Honor of Nicholas and Brendan Nunno In Honor of Jonah Oakes Walker Nikky & Claire Casstevens McHenry & Lisa Tichenor Fund David & Angela Nunno Ronald DeLuca Alan & Sarah Losinger W. Plack Carr, Jr. In Honor of Jenevra, Bryce & Kaylee Owen Dr. Edward P. & Sandra Melmed Chapman, etc. Laura Owen GUARDIAN $1000 - 4999 In Memory of Morgan Elizabeth Resch Lawrence Ginsburg In Honor of Mary Quincy Parsons In Honor of Marc D. Cohen Evelyn Libenguth Hal & Linda Firlotte George & Jo Ann Caruth Marc D. Cohen In Memory of Carolyn Russell Robert & Cheryl Hayes Mr.& Mrs. Josh Feferman In Honor of Ross Cooper Wells Fargo Bank Minnesota Mary H. Hodge Mrs. Nancy Abbott Fordyce Marilyn Cooper In Honor of Paul Shubeck Walter Levy Mark & Sharon Fritz In Honor of Elizabeth Dolan Drs. Caroline A. & Thomas Shubeck Dean McGowan Mr.& Mrs. William Lee Lake Family Foundation In Honor of Angela K.O.Yu Randall & Cindy Murphy Medora D. & William D. White, Jr. Fund In Honor of Lindsay Firlotte Joseph Yu Mike Myers Williamson Family Fund Linda & Hal Firlotte Cindy Ray Yablanksy In Memory of Linda M. Rice In Honor of Bryan Fleming SUPPORTING $50 - 299 Joe & Patricia Rice Mark Fleming In Honor of Matthew Abato SUSTAINING $500 - 999 In Honor of John Walters In Honor of Zachary Friedberg Phyllis and Anthony Marinaccio In Honor of Cooper Adelstein Mr. & Mrs. David Walters Congregation Kol Ami In Honor of Jonathon Adcock Leigh, Keith, Jordan & Chase In Support of the UMDF Dallas 2002 Solomon Schechter Day School Faye & C.E. Crissman Birdsong Symposium In Honor of Zachary & Samuel Juhlmann In Honor of Cooper Adelstein Christie & James Gallop & Family Dr. Frank Elliott Fischer Family Foundation Howard & Anne Adelstein Jeffrey Gallop Weston & Janis Loegering In Honor of Jordan Kalick Steve and Betsy Adelstein Greg Marchand John & Beverly McFall Dr. & Mrs. Glenn Kalick Steve & Mindy Agnoff In Memory of Brian Baum Matt & Lee Neff In Memory of Sarah Elizabeth Langer Carolyn Alper Larry & Penny Baum Judith Williams David and Theresa Langer Timothy and Michelle Antal In Honor of All The Children Jack & Roberta Williamson In Honor of All Affected by Mitochondrial Mark & Patty Arlen Dorothy & Leo Litzinger JD and Barbara Williamson Disorders Bill & Monica Birdsong Sean E. Russell Carol Stanton Lee and Ellen Brown Yardi Systems, Inc. James and Katherine Busby
Mitochondrial News Spring 2002 19 Scott & Mary Ann Berkey Stan & Christine Miller In Honor of Celine Marie Daly Thanks To Our Contributors Augusto P.Brandimarte Lafe & Barbara Prier Beth Mensinger Don B. Campbell In Honor of Brandon Cardoso In Memory of Heidi Marie Daniel Continued from page 19 Kyle & Candace Cullen Cardoso, Martha & Carlos Rick & Vicki Iversen Gary & Sharon Chadwick Jean DiSanto In Memory of Carly Ann Carieri Richard & Laura Johnstone Kenneth and Lisa Chinsky Thomas and Barbara Ferkovic Carl & Rosemarie Carieri Gary & Marlene Keszler Davy Group, Inc. Allan & Mary Ippolito In Memory of Christopher Carracino Michele and Patrick McBride (Daniel) Lyman Delano Patrick & Nancy Maher Mr.& Mrs. Joe Carracino Jeff & Tami Mee Glen Denny Diane & Dave O'Connor In Honor of Brooke Castriota Shirley & Tom Schott Chris & John Farley Mrs. Debbie Stahler, R.N. Laurie and Louis Castriota In Honor of Erik & Juliana DeArce Mark and Susan Fieldstein Thomas & Denise Steinbauer In Honor of Kristen A. Charleston James & Beth DeArce Don and Janice Fowler In Honor of Anna Baker Michael and Gloria Bazan Mr.& Mrs. Robert Rich & Family Karen Gabrielsen Dr. & Mrs. V. Richard Williams Ken and Margaret Berezewski Edwin and Loretta Thompson Ann Gallop In Honor of Phyllis Baumer Ed & El Bozek In Honor of Christopher Dickerson Roger and Susan Gendron Phyllis & Leslie Baumer Marek & Zofia Bozek Willard & Amanda Dickerson Barbara G. Gilbert In Memory of Emily Bazel Mr.& Mrs. Stanley Bozek In Memory of William T. Dickerson David Gilbert David & Brigitte Bazel Carol Charleston Willard & Amanda Dickerson Elisabeth Gilbert In Memory of Kevin Blosky Mr. & Mrs. Marvin Charleston In Honor of Brandon Dix Julie Gilbert David & Joan Bogie Hans & Catherine Claesson Doreen Dix Tom & Marcy Gray Neil & Janet Dabagian Dean & Lori Czuma In Honor of Brianna Dobke Steve, Jennifer and Stephanie Donald & Carol & Deann Jones Ed & Mary Ann Czuma Eric & Mary Dobke Grecsek In Memory of Renee Boisvert Rick & Denise Domalewski Roger & Gloria Klinter Lee & Gennifer Halperin Elizabeth O'Neil Jerry & Patricia Dusek Robert & Shirley Lieske Rick and Lizann Hinds In Memory of Elijah Bonney Steven & Norma Ericson Russell Roberson Richard Hisky David & Heather Bonney Bob & Teri Francis Daniel & Tara Stetler Charles & Grace Hoppel Mr. & Mrs. Herbert Kroeger Mary Galazkiewicz Jeffrey & Deborah Umhoefer Karen & Mike Hudock In Memory of Cody Thomas Bracken Stan & Bobbie Latek In Memory of Conor Philip Doerhoff Michael & Lana Jacobson Valerie & Robert Bracken Carol & Steve Nowaczyk Mr.& Mrs. Douglas Doerhoff Eric and Kendyl Janis James M. Lauer Mr.& Mrs. Norman Polcyn & Family In Memory of Kendall Dorn Paul King In Honor of Hannah & Emma Bruder Ed & JoEllyn Szymanski Mary Lou Dorn Jim & Catherine Lea Thomas W. and Joann S. Adler Gerald Valenti In Memory of Laura Dribin Jamie and Taylor Leutze Philanthropic Fund Maylyn Valenti Beth & Dennis Dribin Michael & Laura Levine Judy Blomqvist E.M. & E.A. Walen In Memory of Matthew James Dudgeon Terry & Nolan Mackin Richard & Pat Bruder Kevin & Debra Werner Kevin & Roseanne Callahan Tony Mastro Dr. & Mrs. Scott Bruder In Honor of All The Children In Honor of Kerie Krystina Dwyer Sue & John Medina Johnson & Johnson Family of Fred and Lynda Blank Mr. Kelley Dwyer Jeannie & Robert Moreland Companies Raj K. Chopra In Memory of Anastasia Echert Bruce & Carolyn Moskowitz Alice Dorethy Ross Molly Devlin Rita and Bruce Green Suzanne Moss In Honor of Emma Budnyk Jack & Barbara Ebert Guns N Garters Square Dance Club Don & Val Persky Virginia Buchanan Miss Camille Forgues In Honor of Ian K. Edwards Kenneth & Linda Rees In Honor of Bradley Burgener Mary Green Miner Alexis Edwards Gloria Sanford James and Merrilee Ahlgrim Stephen Newsome In Honor of Sophie Edwards Jeff and Nancy Segal Dorothy Anilosky Judi Stanley Amy Grothaus James Shapiro & Laura Miller Mr.& Mrs. Herbert Backhaus Carlos Torres, MD In Honor of William "Bill" Evans Stuart & Rebecca Sharpe Craig & Dena Bechtle In Memory of Lucy Christ Mr.& Mrs. Ignatovich Daniel & Denise Smith Maurice & Betty Burgener Daniel Christ Mrs. Alice Peters Chuck and Judy Sullivan, Jr. Mr.& Mrs. A.J. Clare In Honor of Sean Mackenzie Clark In Honor of Gina Fares Dan & Natalie Sweny Marianne Daley Richard & Pamela Bradfield Daniel Dominy & Family Scott and Carol Truncellito Charley Galassini Kara and Guy Cimorelli Kathy & David Fares Beth and Mark Voorhees Carl and Wanda Hauber Ann & Keith Clark Velma Fares John Weiss Natalie Hetzel John & Diane Clark Gina and Brian McGuire Vance & Porter Young Mr.& Mrs. Richard Lauer Gary and Melodie Kondratek In Honor of Logan Ferrari Alan and Rose Zimmer Ruth Lauer In Honor of Thomas Cloues Polaroid In Honor of Melissa Akins Harry and Ann Lukens, Jr. Betsy Davis In Memory of Jack Fitz Patrick Cathy Akins Steven and Leann Malecha In Honor of Jordan & Arielle Cohen Carson & Dan Lockman In Honor of Peter Andersen Peter & Susan Markuson & Family Dr. Leonard & Sue Bernstein In Honor of Bryan Fleming Mike & Meredith Andersen William & Margaret Mihalyi Markowitz, Oberfeld & Wagenberg, Cordax, Inc. Mr.& Mrs. James Bouldin Julie Nielson MD Staff In Honor of Jacob Flicek Jenny & William Cantrell Stanley and Linda Partyka, Jr. Renee & Stan Keller John and Karna Campobasso Mr.& Mrs. George L. Hamilton, Jr. Brian and Susan Ramsey In Honor of Adelaine "Laney" Cooper Harvey Ehman Mary Ann Hamilton Robert and Melissa Skrabal Audrey Jung Jack and Pamela Landrum Julie Hufstutler Craig and Jacqueline Splinter In Honor of Chad Cooper David and Cynthia Melby Leslie M. Starr Carole and Joseph Stark Emma Lou & Jack Cooper In Honor of Kevin Fox Meg Turner Joni Vonderohe DJB Liberty Hazel S. Grimes J. Woodson Mader Todd and Angela Vonderohe In Honor of Madison & Molly Cooper Mark Winstead In Honor of Ashton B. Anderson Adele Wallace George & Amy Hammerle In Honor of Zachary Friedberg Craig & Cheryl Anderson In Honor of Matthew Calhoun In Honor of Eddie Curtis Marci Merzer In Honor of Robert "Bobby" Arnold, Jr. Alison Fincher, Jr. Amy & Trevor Curtis Judith & Steven Rieger The Apex Window Cleaning Company In Memory of Lydia Capparelli In Honor of Max Dahlerbruch In Honor of Dwight Arts Furey Mr. & Mrs. Thomas Arnold Mr.& Mrs. Emil & Louise Anderson Ira & Alberta Bilson Furey Roofing Deborah & Richard Barsotti Mr.& Mrs. Steve Dahlerbruch
20 Mitochondrial News Spring 2002 In Honor of Anna Aguiar Gauderer In Memory of Alanna Lengyel Mr.& Mrs. William R. Russell, Jr. In Honor of Meagan Alexandra Nelson Dr. Maria Cecicia Aguiar Gauderer Elleen & Vic Dorr Cheryl Shelton Flora T. Nelson In Honor of Anthony "AJ" Giantonio In Honor of Caroline Elizabeth Lyman Nancy Slater In Honor of Jennifer Lynn Nicholas Eleanor Davey Heidi Mihalik David Thompson Nick & Susan Nicholas In Honor of Shelby Gilmore In Honor of Emily Manaster Tishcon, Corp. In Honor of Nicholas and Brendan Nunno Theron and Kristin Gilmore Lisa and Michael Manaster Richard Yunger Carol Fricchione In Honor of Michele Ginnis In Honor of Austin Manz In Memory of Gina Marie Mohan Susan & George Key Kathy & Jerome Ginnis Stephen & Mary Parish Dan & Patsy Bender Barbara Marinaro In Honor of Chase Gordon In Honor of Suzanne Marous Mr.& Mrs. Mark Campbell Paul Nunno Donna & Wyatt Gordon Mr.& Mrs. Joseph Francis, Jr. Matthew A. Campbell Paul & Laura Nunno In Honor of Justin Hagdahl In Honor of Gregg Matera Deborah Corna Raymond & Pamela Nunno Mrs. Doris Neill Karen Foti Ann and James Dalton Carol & Dennis Rorke In Memory of Stefany Hagdahl In Honor of Sherry D. Mathison Joe & Renee DiMatteo In Honor of Alex Obert-Thorn Mrs. Doris Neill Linda Valentine Evelyn & James Downey Alan Sasserath CPA, P.C. In Honor of Abigail Luisa Halder In Honor of Kristen Elizabeth McGuire Garrow's Draft Service In Honor of Christine O'Brien Beverly Wright June Ensminger Mark & Sharon Grunebach Mrs. Chris O'Brien In Honor of Mason Hall Michael and Twyla Hassel Phil & Beth Halter In Honor of Meghan Shea O'Connor Larry and Nancy Hall Charles & Barbara McGuire Infiniti Real Estate Services, Inc. Jim & Tina O'Connor In Honor of Lianne M. Harding In Honor of Patrick McKiernan Gordon & Shirley Kidd In Honor of Jacob Aaron Oriatti Bernard & Helen Learnihan Terry and Thomas McKiernan Richard & Mary Kubach Patrick & Cathleen Oriatti In Honor of Mary C. Hawthorne In Memory of Kayley McManus Lou & Donna Kudrav In Honor of James Owens Shelby Hawthorne Elspeth Gray Mr.& Mrs. Anthony Mohan Mr.& Mrs. E. A. Joakimides In Memory of Maryte "Mary" Heenan Jenny & Bruce McManus Ed & Mary Mohan In Honor of Logan Palmer Anne L. & Gilles Delhommeau In Memory of James Manuel Sr. Clara Mohan Bonnie Klein In Honor of David Hefferon McSpadden Mohan's Restaurant In Honor of Nicholas Pisani Barbara Rosnagle Marianne & Jim Haughney Melinda O'Toole William and Eileen Tobin In Memory of Lee Jordan Henrikson In Memory of Ryan Meade Kyle Olson In Honor of Carly Platt Dan & Amy Henrikson Jon and Kim Birky Pitcairn Women's Club Larry & Barbara Edelman Mary A. Stiles Paul Brown Mary Ann Porco In Honor of Emily Plesko In Honor of Stewart William Hodges Christopher and Karin Cahill Rotary Club of Monroeville Gerald B. and Richard P.Adelstein, Jennifer Parks Paul & Gail Correll Paul & Paula Quinn DDS, Inc. In Honor of Wilma (Billie) Hotaling David and Donna Dunlop Michael Restano Heating & Cooling Deborah and Harry Patterson Dan Hotaling George and Jean Gfall RMC Vending Evelyn E. Perry In Honor of Daniel J. Howe Kaye Irwin Marsha Ruane/ Richard Tuite In Honor of Amanda Nicole Polsky Mr.& Mrs. Thomas Howe Richard and Kelly Matter Tom & Louise Schuerger Marge & Joe Scaduto In Honor of Jack Hsiu Brian & Lissa Reitz Kara Strittmatter In Memory of Douglas A. Quallich Ying-Hwa Hsiu Tod & Sarah Seiling George & Kathy Svilar Mr.& Mrs. J. Hendrickson In Honor of Kyle Hughes Super Target T1759 Sandy Turi Mr. Len Quallich Kay Magruder Joe & Marie Talley Jayne & Matt Vizzini In Memory of Margo Quarles In Memory of Tristan Hull Target District Offices D329 & D330 Sally Whatmore Ruth & Richard Schwartz Tom & Inike Hull in Kansas City In Honor of Austin Dean Monson Gregory & Andrea Smith In Memory of Lori D. Hullinger Target Stores Eleanor Paulazzo In Honor of Nancy Quinn Herbert & Dorla Hullinger Target Stores District 119 Office In Honor of Amanda Leigh Montgomery Carol Quinn In Honor of David Jaffe Suzanne & Matthew Thomas Bob & Sandra Montgomery In Honor of Anne Marie Rady Alan Jaffe Jerilyn & John Waters In Honor of Emma Grace &Thomas Audrey Lechner In Honor of Justin Jenner In Honor of Jamie Menser Christopher Montgomery Mr.& Mrs. Harold Meehan Bill & Betty Karr Anita Menser Conrad & Karen Mills Pauline Mueller In Honor of Tad Jonik In Memory of Kyle Christopher Meyer In Honor of Sara Moriarty Nancy O'Toole Agnes Holt Dave & Val Meyer Tim & Marilyn Moriarty Howard and Virginia Seabeck In Memory of James Kastritis In Honor of Mathew Mickelson In Memory of Michael J. Murphy In Memory of Kevin Ramsey Effie Kastritis Ryland Homes Mr. Joel W. Chagnon Lisa Ramsey Vasilios & Dena Sepsis Debbie Starbeck Keith R. & Alice M. Murphy In Memory of Morgan Elizabeth Resch Ed & Joanne Sutryk In Honor of All Affected by Mitochondrial Daigle's Steer-O-Master, Inc. Patricia Berry Nancy & David Winfree Disorders In Memory of Kayla Elizabeth Naughton Bob & Roberta Blean In Honor of Katie Kerns Betty Belz John Hackett Duane & Helen Carlblon Janice Geigle Ms Danita Cardey Man Mountain, Inc. David & Sally Lamp In Honor of Gwenn W. Kilburn Carol Chester Murphy Enterprises Jim Resch Galen & Anna Kilburn Compaq Computer Corporation Kate & Michael Naughton Dan & Shelly Windett In Honor of Adena Kling Carolynn Crutchley William & Anne Marie Naughton Zeglin's Home T.V. & Appliance Laura Kling The Ferari Family Mrs. Anne M. O'Sullivan In Memory of Linda M. Rice In Honor of Melanie Kraig Mr.& Mrs. Harold Garnham Colleen & Edward Roohan Joseph Carson, Jr. Rose Marie Roodhouse Jodi Simone Kay William Roohan In Honor of Nicole Rind In Honor of Riki Kusuhara Carolyn & Richard Keith Saratoga Honda Keith & Linda Rind Karyn Alexander B. Klotz In Honor of Abigal Neal In Memory of Tyler Grey Robinson Elaine Christensen Mrs. Jessica Lee Bob & Linda Neal Bessie & Allen Robinson Carolyn Kusuhara Peggy Ann McQuade In Memory of Philip Neff In Honor of Martha Rossi In Honor of Malin Landeck James Nousek, Jr. M.D. Meg & Stu Allen Martha Rossi, RN Gerhard Landeck Ms Pia Odgaard Mike & Suzy Dilts In Honor of Alexandra Rudzitis In Memory of Avery Langford Kim Parham Jessica Dum Mr. & Mrs. Dan Dixon Kathlyn Barksdale Rick Parr
Mitochondrial News Spring 2002 21 In Honor of Jamieson Smith In Honor of Eric Withum Martin & Ruth Litwin Thanks To Our Contributors Vicki & Larry Powell Tina & Rich Withum Marty & Norma Markowitz Kathy & Larry Rowe, Jr. In Honor of Haley Wojciechowski Nancy & Ramiro Martinez Continued from page 21 In Memory of Rhonda Marie Smith Walter & Celeste Giraitis Dinah & Joe Matthews In Memory of Carolyn Russell Russ & Barbara Smith Renee & Steven Wojciechowski Susan Ann McAlister Cindy Cairney In Memory of Emma Leigh Smythe In Honor of Capucine Zelenko David & Misty Messing Duluth Curling Club, Inc. John & Rosemarie Riordan Susan Zelenko Betty & Tom McCormick Patrick Francisco In Honor of Graham Sowers In Honor of Cody Janell Zink Michael McNair Kevin & Patricia Fredericks Bryan & Lynn Darling Loretta Zink Betty McReynolds Fryberger, Buchanan, Smith & Bert & Danna Duncan In Support of the UMDF Dallas 2002 Paula Mishler Frederick Law Firm Janna & Mike Sowers Symposium Marie Moerscheel James & Kathleen Gels In Honor of Patricia J. Stokes Dianne Alexander Amy & David Moore Manley & Lillian Goldfine Patricia Jarvis Stokes Betty McCarty Allen Catherine Morales Grandma's Marathon - Duluth, Inc. In Honor of Natalie Sunderman Eric & Shirley Anderson Dr. Gary & Betty Morchower Paul & Cynthia Hayden Crockett Elementary Mrs. Ruth R. Andres Ross & Pamela Murfin Hon. Gerald W. Heaney Ricardo & Beatriz Juarez Donald Avant Paula & Sam Neuman William Himango Laura McGuire Ellen Backes Joe B. Neuhoff Intl. Assoc. of Assembly Managers Lisa McGuire Emily Baldridge Thomas F. O'Toole District 3 Neda McGuire John Barake Mr.& Mrs. William H. Pardoe Mary & Dean Jacobus Mrs. Mary Ann Montgomery Mary Anne Beasley Karen & Bill Pardue Donna & Arne Johnson In Honor of Max Sweeting Bill and Barbara Benac Virginia Petty Andy & Mary Kenyon Dick & Terry Orgel Sydney G. Mayo Bender Carol C. Potter Lauren & Catharine Larsen In Honor of Baylee Tadlock Mike & Jackie Bennett Jan Price Anne Lewis Mel & Juanita Tadlock Rita Blasser C.W. & Carol Reynolds Liscomb-Hood-Mason Company In Honor of Matthew Thompson James Blythe Mr.& Mrs. George T. Reynolds, III Mark & Laurie McShane Rick & Nancy Thompson Tom & Cordelia Boone Ray Robbins Greg & Mitzi Ortale In Honor of Cameron Tritsch Clifford Booth Beverly Roberts Richard & Sharon Parsons Dr. & Mrs. Byron Blagburn Scott & Deborah Boxer Philip & Cecelia Rosen Nick Patronas Drs. Adam & Niesje Langston Dr. Dale & Jen Burleson Hermine Sallinger & Carolyn Helfman Carol & Peter Person Tracy Martin & Sheri Martin Ms E. T. Calloway Paul & Cindy Sander Philip & Sharon Rolle Eric & Tonya Price Mark & Lynn Carlton Amy & Bob Schellhorn Fran Russell In Honor of Robert Merle Tucker Dr. Lynne Champagne Miriam K. Schlesinger Kurt & Barbara Soderberg Robert & Leigh Ann Tucker Dale Clark Separate Property Joan Sutterland In Memory of Walker Stine Tyson Don & Beverly Clark Patty Shelton Mary Lou Tarvers Jon, Shelley & Matt Butcher William V. H. Clarke Miss Rita Sherbenou Richard & Merry Joy Wallen Robert & Barbara Green Karen Crowder William & Joan Sherman Jacob & Florence Wurzel In Honor of Andrew Uhrman E. K. Denenberg Gerald & Marianne Shiller In Honor of William Ryan Mr. & Mrs. Malcolm and Helene Tom & Verity Devine Sara Shipper Kathleen Meany Zucker Helen S. DeWeese Jan Mark & Louise G. Sloman In Honor of Caitlin, Genny & Dalton In Honor of Zeth Ullman Susan & David Duitch Mr.& Mrs. Wade Smith Sawyer Nadean Adams Mr.& Mrs. Chad Dunston Sam & Della Steinberg Jeannine & Curtis Sawyer David & Kathleen Stoddard Joanne Dzina Candace and Max Swango In Honor of Maile Schank Neil & Jacqueline Stoddard & Family Patti L. Eads Bette A. Taylor H and RZ Inc. Kurt & Dorothy Ullman John Edrington John Taylor In Honor of Jennifer Schnitzler Lynn & Paul Ullman David & Kathy Eissman Nancy A. Torell Mark & Joni Schnitzler In Honor of Mackenzie Valentyn Patti & Howard Fields Frank & Nancy Waters In Honor of Kimberly Schuettpelz Nancy & Tim Valentyn Melissa & Douglas Fordyce Carolyn S. Webber Lee & Ruth Schuettpelz In Honor of Alexa Van Buren Logan Geeslin Betsy Welp In Memory of Angus Scrivener Marie Van Buren Joe Gethers Mr. & Mrs. Paul A. Whitman John Hagan In Honor of Nathan Volz Chaia & Howard Greenburg Scott & Edna Williams David Steinman Stacy Volz Dr. Ronald Haller Corri & Alexander Wilson In Honor of Sharon Shaw In Honor of Lora Wasielewski Mr. & Mrs. Eric Hanson Mrs. Lawrence A. Wilson Johnston-Lemon Group, Inc. Rose Mary & Raymond Wasielewski Claud & Jan Hardie Dr. Julius & Rhea Wolfram Elizabeth Boettner-Hammond In Honor of Maggie Watson Harry Levy Properties Mr.& Mrs. David P.Hammond Kevin & Magaret Watson Gaynelle, Mac & Anna Henger James & Virginia Kelly WPVI-TV Kimberly Hicks Charles & Teresita McGinley In Honor of Linda Way Fred Hoster Lisa Reina Linda & Vincent Way Mr.& Mrs. Thomas Howard, Jr. In Honor of the Shelly Family In Honor of Faoileann & Seamus Webb Nancy Huggins Claire Bonner Franz & Helga Geyling Linda & Lannie Hughes In Memory of Ram Shivashankar In Honor of Kelly Murdock Wells Kim Jordan Seetha and Harish Aiyar Carol Murdock Susan & John Keir In Honor of Paul Shubeck In Memory of Samantha Anne Wenzler Elaine Kingery Caroline T. Pugliese Jill Wenzler Diane Kitzman Antoinette Rampello In Honor of Erin Williams Carolyn Kornman John L. Sebastian Helen M. & Charles Williams Ed Kraus In Honor of Jordon Lee Simpson In Honor of Jacob Willis Alan & Karen Kurzman Jillane Bitomski Chester & Faye Gierlach Mike Lev Robert Simpson In Honor of Anslee Marie Wise Florence & Harry Levy Mrs. Terri Wise Maurice Levy
22 Mitochondrial News Spring 2002 UMDF MEMBERSHIP AND DONATION FORM Enclosed are my $40 Annual Membership Dues (Outside U. S. $50 in U. S. Currency ) UNITED MITOCHONDRIAL DISEASE FOUNDATION Enclosed is my gift of $ ______to UMDF to help sustain research and family support. My gift is $40 or more, please send me a complimentary issue of the Mitochondrial News (Dues paying members automatically receive the Mitochondrial News three times a year). Change of address MAKE CHECKS PAYABLE MEMBER / DONOR TO: U.M.D.F. UMDF is a 501(c)(3) Organization. Gifts are tax-deductible Name according to IRS regulations. Address UMDF accepts MAC, VISA or Mastercard City State Zip credit card charges for donations and dues. Phone: Home Work FAX Fax or mail the following information to UMDF: Email Address credit card number, expiration date, PLEASE CHECK Affected adult(s) / child / children’s name names as listed on the card and signature. and date of birth: Patient Spouse Parent Relative ______Mail membership, donations Friend / Teacher / Other ______and address changes to: Medical Professional UMDF Specialty ______8085 Saltsburg Road, Suite 201 Professional Organization ______Pittsburgh, PA 15239 Name ______
UMDF MEMBERSHIP RELEASE FORM
UNITED MITOCHONDRIAL DISEASE FOUNDATION Yes, I want to Network! I will complete this form and send to UMDF. Name Please give me the apppropriate form to receive network Address information from the UMDF Patient Registry. City State Zip
Phone FAX By signing the undersigned Release, the signator authorizes the release of name, addresses and/or phone numbers to be provided Email Address to other UMDF members.
If a physician or scientist requests names and addresses, the member will be contacted and GENERAL RELEASE given the doctor’s name. Under no circumstances will any member’s name be released to anyone Please DO DO NOT provide my name and address to other members in my area. but another member, and only if you have approved such release by indicating above. DO DO NOT include my phone number. UMDF assumes no responsibility for the protection of the data except as described DO DO NOT include my email address. specifically in this release. At anytime, you may revoke your approval by delivering a written request to UMDF. Confidentiality is of utmost importance to UMDF and is essential to encourage networking among members. Signature ______Date ______NONPROFIT ORG. U.S. POSTAGE PAID UNITED MITOCHONDRIAL DISEASE FOUNDATION Pittsburgh, PA 8085 Saltsburg Road, Suite 201 Permit No. 4899 Pittsburgh, PA 15239 Phone 412-793-8077 Fax 412-793-6477 email: [email protected] http://www.umdf.org
Volume 7 • Issue 1 • Spring 2002
In This Issue: Ask the Mito Docs and They will Respond ...... 1 Chairman’s Report ...... 2 National Office Updates ...... 3 Research Update ...... 4 Standards Workshop ...... 8 Mito-Dallas 2002 Schedule ...... 9 Adults Corner ...... 11 Fundraisers ...... 12 Chapter Activities ...... 15 Chapters and Support Groups ...... 18 Thanks To Our Contributors ...... 19 Membership Form ...... 23 Deadline for next issue is June 1, 2002