WINTER 2008 Including Donors 2007

FSHA publication of the FacioscapulohumeralW Muscularatch Dystrophy Society Connecting the community of patients, families, clinicians and investigators

DUX4 and FSHD: How the FSH Society Connects the Research Community By Alexandra Belayew, Ph.D., Universi- thousands of individuals have benefited onto which the HLTF protein was bound ty of Mons-Hainaut, Mons, Belgium, and from Prof. Collen’s discovery. At that in the cell. Such experiments, named Alberto Rosa, M.D., Ph.D., Institute for time, Dr. Belayew was studying a protein chromatin immunoprecipitation (ChIP), Medical Research “Mercedes y Martín named HLTF which has the characteris- are now routinely done in labs, but at Ferreyra” INIMEC-CONICET, Córdoba, tics of a “transcription factor” (a protein the time, there was no kit for it and the Argentina that controls the expression of one or amount of work involved was quite more genes). impressive.” Dr. n 2007, DUX4 emerged as a candidate Another sci- Belayew spent I gene for FSHD. DUX4 is from a family entist in Dr. an entire night of regulatory and developmental genes Belayew’s labo- on her home and stands for DoUble homeoboX gene ratory, Hao computer 4. DUX4 has been found to reside inside Ding, Ph.D., a searching Inter- of each repeat of the D4Z4 repeat array. physician from net databases When an individual has ten or fewer China, was for sequences D4Z4 repeats he or she can have FSHD. working on his similar to DUX4 research has an interesting histo- Ph.D. thesis approximately Dr. Belayew and researchers in her lab, ry going back to the mid-late 1990s and under Dr. one hundred Frédérique Coppée (front) and Sébastien Charron, the FSH Society has been instrumental Belayew’s University of Mons-Hainaut, Mons, Belgium DNA fragments in advocating and funding research on supervision. Dr. that bind the DUX4 in five different countries. The Belayew explains, “Dr. Ding has an HLTF isolated by Dr. Ding. “It was very scientists working on DUX4 have perse- amazing work ethic. He was always test- frustrating because at the time Internet vered despite difficulty in obtaining ing out new ideas in the off hours when connections were very slow, and only a funding and getting papers accepted for the lab was nearly empty. One Monday small part of the human genome was publication. The FSH Society facilitated morning, at a research meeting, Dr. Ding known.” However, at last she identified a the connections leading to progress in explained that he had set up an experi- sequence that looked very much like a understanding the role of DUX4 in ment to go “fishing” for all the genes continued on page 4 facioscapulohumeral muscular dystro- phy by funding research grants and trav- el grants and enabling researchers to Patients and Families To Gather connect to one another through our In Iowa City/Coralville: July 27, 2008 website and our annual research sym- posia. The FSH Society’s staff and scien- he 2008 International Patient Iowa City and Coralville are within tific advisory board also work actively T Conference will be held at the easy driving distance of major Mid- with researchers to help with network- Marriott Hotel and Conference Center, western cities and served by airports in ing and connections. Coralville, Iowa, on the banks of the Cedar Rapids, the Quad Cities, and The story of Alexandra Belayew, Iowa River, one mile from University of Des Moines (see map page 2). These Ph.D., begins in Belgium. Prior to devel- Iowa Hospitals and Clinics and min- eastern Iowa communities, energized oping an interest in muscular dystrophy utes from downtown Iowa City. by academic and artistic prowess, and research, Dr. Belayew was heading a Iowa City is home to the University outdoor recreation, are in close prox- small group in the laboratory of Prof. of Iowa Hospitals and Clinics and the imity to charming farm communities Désiré Collen, a renowned scientist and UI Roy J. and Lucille A. Carver Col- that document our rural heritage. Many medical doctor at the Catholic Universi- lege of Medicine, a comprehensive vacation, sightseeing, and other leisure ty of Leuven in Belgium. Prof. Collen academic medical center that is distin- opportunities are available. was famous for his discovery of a pro- guished internationally. For 16 years, The conference will begin with reg- tein named tPA (tissue plasminogen the UI Hospitals and Clinics have been istration and a buffet breakfast at 8:00 activator) used to re-establish blood recognized as one of “America’s Best” a.m. on Sunday, July 27, and conclude flow in blocked arteries. Hundreds of by U.S. News and World Report. by 5:30 p.m. continued on page 2 2 FSH WATCH NEWSLETTER I WINTER 2008

Board of Directors Patients and Families To Gather Daniel P. Perez, President & CEO William R. Lewis, Sr., M.D., Chairman In Iowa City/Coralville: July 27, 2008 Howard L. Chabner, J.D., Vice-Chairman Carol A. Perez, M.Ed.., Secretary continued from front page William Michael, C.P.A., Treasurer E. Ann Biggs-Williams Informal reception and greeting will be tions at 1 (800) 228-9290. The hotel is Robert H. Brown Jr., M.D./D.Phil. * available on Saturday from 4:00 p.m. holding a block of rooms at $99.00 per James A. Chin, Sr. to 7:00 p.m. at the hotel; a continental night (single, double, triple, or quad), JoAnn P. Forance breakfast and send off will be avail- plus taxes and parking. This is a new David J. Glass, M.D. able on Monday, July 28, 8:00 a.m. to facility and is fully ADA-compliant with William E. Hall Jr., J.D. * 10:00 a.m. accessible and equipped guest rooms. William S. Herzberg, M.D. Recreation facilities including the pool Louis M. Kunkel, Ph.D. Lectures and panel discussions are C. Larry Laurello, P.E. planned to bring the most current are accessible. For the best selection Richard A. Lefebvre, M.B.A. advances in FSHD research to the of rooms, please make your reserva- William R. Lewis III, M.D. FSHD community of patients, families tions early. The closing date for the Theodore L. Munsat, M.D. * and scientists. There will be formal Society’s block of rooms is June 27.! Paul Schultz, M.D. * and informal forums to advance knowl- Robert F. Smith, Esq. edge, understanding and provide sup- Z. John Stekly, Sc.D. • Christopher Stenmon, C.P.A. port and networking. The reception, Minneapolis / continental breakfasts and a luncheon St. Paul MINNESOTA Scientific Advisory Board are included in the registration fee: WISCONSIN David E. Housman, Ph.D., Chairman Milwaukee • $80 each for adults, $40 each for chil- IOWA Michael R. Altherr, Ph.D. dren ages 12-18, and children under Robert H. Brown Jr., M.D./D.Phil. Chicago• 12 years of age, free. More details will Iowa Rune Frants, Ph.D. City be made available on the Society’s Louis M. Kunkel, Ph.D. Omaha • William R. Lewis, M.D. website as planning proceeds. NEBRASKA William R. Lewis III, M.D. For hotel reservations, go to MISSOURI ILLINOIS Katherine D. Mathews, M.D. KANSAS www.fshsociety.org and click on the • Theodore L. Munsat, M.D. * Kansas link for the 2008 Patient Conference/ City St. Louis• George W. A. M. Padberg, M.D. Coralville Marriott Hotel and Confer- Paul Schultz, M.D. * Iowa City/Coralville is within Kathryn Wagner, M.D., Ph.D. ence Center, or go to the hotel’s web- www.marriott.com/cidic 250 miles of Minneapolis, * Board Member Emeritus site at . The Society’s group code is fshfsha. For Milwaukee, Chicago, St. Louis, Executive & Development Office telephone inquiries, call (319) 688- Kansas City and Omaha Nancy Van Zant, Executive Director 4000 (Coralville), or Marriott reserva- FSH Society, Inc. c/o BBRI R353 64 Grove Street SAVETHEDATE Watertown, MA 02472 USA (617) 658-7878 AGathering ofFSH SocietyMembers (617) 658-7879 Fax [email protected] NewYorkBotanicalGarden Patient Resources Office April22,2008 Carol A. Perez, M.Ed. 6:00p.m.Cocktails • Dinnertofollow. FSH Society, Inc. 3 Westwood Road AneveningformembersoftheFSHSocietyinthetri-statearea,andbeyond, Lexington, MA 02420 USA (781) 860-0501 tomeeteachotherandtohearabriefprogramaboutresearch (781) 860-0599 Fax andclinicaladvancesinFSHMuscularDystrophy. [email protected] • Menu and evening generouslyhosted byAbigail and RobertKirsch Research Programs Office • Daniel Paul Perez Therewillbenosolicitationoffundsatthisevent. FSH Society, Inc. Attendancelimitedtoindividuals 11 Elmbrook Circle withcurrentmembership,2007or2008. Bedford, MA 01730 USA • (781) 275-7781 Invitation to follow. Formoreinformation,ortoreserveaplacenow, (781) 275-7789 Fax pleasecall(617)[email protected]. [email protected] • TheFSHSocietyisa501(c)(3)organization www.fshsociety.org dedicatedtosolvingfacioscapulohumeralmusculardystrophy. FSH WATCH NEWSLETTER I WINTER 2008 3 Katherine Mathews, M.D., to Offer Clinic A Letter from the Chairman, for Infantile FSHD, Board of Directors, FSH Society

July 28, 2008 February 2008 Christopher Sten- atherine Mathews, mon, and Bill and K M.D., Pediatric Dear Friends, Judy Herzberg for Neurologist, and other In November, I wrote to you to the many generous staff at the University invite you to participate in the Chal- gifts they have of Iowa Hospitals and lenge of Hope, my family’s challenge solicited from their Clinic will offer a clinic to FSH Society members and to the friends and family for infantile FSHD FSHD community. I am delighted that on behalf of the patients on July 28, you have made so many gifts, often FSH Society in 2008. To express inter- new and larger gifts, to match this 2007. William R. est in the clinic, please Katherine challenge. All our gifts have Lewis, Sr., M.D. email Jenny Lazzaro at Mathews, M.D. As you may recall, we offered to advanced patient jennifer.lazzaro@ Reprinted with per- match your gift and the gifts of others services, education and outreach, advo- fshsociety.org. mission, Roy J. and on a dollar-for dollar basis if you made cacy, and research—all critical to the To read more about Lucille A. Carver College of Medicine, your gift by December 31. As is report- work of the Society and our community. Dr. Mathews, please University of Iowa ed elsewhere in this issue of Watch, Researchers continue to be hard at refer to her interview the Challenge has been met, and my work looking for the gene or genes that in FSH Watch, Fall 2007. wife and I have made our gift of cause FSHD, and some investigators $100,000 to the FSH Society, specifi- are using animal models to try experi- cally to support post-doctoral research. mental therapies. We are optimistic that Society Welcomes David Together over 250 individuals, foun- this work can lead to a cure for FSHD J. Glass, M.D., to the dations and businesses in the FSHD and treatments for patients. Board of Directors community contributed $190,000. As On behalf of all the patients and their illiam R. Lewis, you can see from the Donor Annual families, thank you for supporting the WSr., M.D., Chair- Report included in this issue, many Society. man, welcomes on people have been generous with gifts Sincerely, behalf of other mem- large and small. I’d like to especially bers, David J. Glass, thank the Kelly Family, Howard Chabn- M.D., to the Society’s er, Marshall Gillespie, Jeffrey Jacobs, William R. Lewis, Sr., M.D. Board of Directors. Dr. Glass is Global Head, The Challenge of Hope Raises $290,000 Muscle Diseases, Novartis Institutes for and Exceeds the Goal! David J. Glass, M.D. Biomedical Research, This was the Challenge of Hope. Cambridge, Massachusetts. Prior to join- n late 2007, Dr. and Mrs. William R. Many people renewed their 2007 mem- ing Novartis, he was Vice President for I Lewis, Sr., offered a challenge gift to Muscle Diseases at Regeneron Pharma- the Society and to our members. They berships and helped to meet the Chal- ceuticals, where he worked for 14 years. agreed to match member gifts on a lenge of Hope. Others who had already He holds an M.D. from New York Medical dollar-for-dollar basis if gifts were renewed their memberships, made College and conducted postdoctoral work made by December 31 – up to a total another gift to the Society for FSH mus- at Columbia University. He is the co- of $100,000. By mid-December, the cular dystrophy. The Lewises were author of more than 50 peer-reviewed Challenge goal was reached, but many eager to see new members coming into research articles on cell signaling mecha- people had not yet had a chance to the Society and members increasing nisms in neuromuscular disease, obesity, participate. Four members of the their gifts. Together with Dr. and Mrs. and cancer. Board of Directors agreed to issue a Lewis’ gift, the Challenge brought We look forward to the service Dr. $290,000 in gifts to the Society at year’s Glass will bring the Society and the FSHD “supplemental” challenge to match gifts end.! community.! yet to come. ! ! ! The FSH Watch is published by the FSH Society and distributed by mail to its members and sup- porters. All material is copyrighted and may not be reproduced without written permission. To be It is the editorial policy to report on devel- placed on the mailing list or to submit an article, please write to: Nancy Van Zant, Executive Director, opments regarding FacioScapuloHumeral FSH Society, Inc., c/o BBRI R353, 64 Grove Street. Watertown, MA 02472 USA. Articles may be edited Muscular Dystrophy (FSHD), but not to for space and clarity. Every effort has been made to ensure accuracy in the newsletter. If you wish to endorse any of the drugs or treatments correct an error, please write to the above address. Look for us on the Internet at: www.fshsociety.org discussed. We urge you to consult with Editors: Nancy Van Zant and Daniel Paul Perez. Editorial Assistance: Carol Perez, Jenny Lazzaro, your own physician about the procedures Howard L. Chabner & Charles C. Perez. Graphic design and editorial assistance: Susan L. Stewart, mentioned. ColoradoLasertype.com 4 FSH WATCH NEWSLETTER I WINTER 2008

DUX4 and FSHD, continued from front page

dence that a gene might be present in Meanwhile, in Argentina and unbe- D4Z4. Dr. Ding, however, found that the knownst to Dr. Belayew, a research team promoter he had isolated corresponded was working on DUX4 and FSHD under to a part of Dr Hewitt’s open reading the direction of Alberto Rosa, M.D., frame, so that D4Z4 may potentially Ph.D. Dr. Rosa tells his story: “when I express a shorter protein they called was 16 years old and in my last year of DUX4. This protein has the characteris- high school, I was interested in both sci- tics of a “transcription factor” (a protein entific research and clinical medicine. that controls the expression of one or First I obtained an undergraduate degree more genes). Also, the protein has two in biochemistry and a Ph.D. in molecular sequences called homeodomains which biology—part of that training in an insti- are present in proteins that participate in tution led by the Argentinean Nobel Lau- muscle formation and regeneration. Dr. reate L. F. Leloir, M.D. In 1988, I started Belayew contacted Dr. Hewitt, who my own research laboratory and, for sev- immediately invited her and Dr. Ding to eral years, studied basic genetic phenom- visit her lab in Manchester. After a lively ena in fungi.” Dr. Rosa then obtained a discussion, Dr.Hewitt formulated the fol- degree in medicine and his second Ph.D., Alberto Rosa, M.D., Ph.D., Institute for Medical Research lowing hypothesis: “in non-affected indi- at the University of Cordoba, the oldest “Mercedes y Martín Ferreyra,” viduals, DUX4 is not expressed because university in Latin America. “After INIMEC-CONICET, Córdoba, Argentina the large number of D4Z4 elements is in obtaining my M.D, I wished to follow my a tight chromatin structure; in FSHD high school dream: to link the fields of gene promoter and was referred to as patients this chromatin is open–because basic science and clinical medicine in “similar to the FSHD locus.” Dr. Belayew of the small number of D4Z4 Argentina. I was particularly encouraged had never heard of FSHD, nor had any- copies–leading to DUX4 activation and by the exciting progress in the study of one else in the lab. production of a toxic the human genome. My A young Flemish graduate student protein that kills the previous research inter- named Jan Gabriëls had recently joined muscle cells”. Dr. est in fungi was the epi- the team; he was a bioengineering gradu- Belayew contacted Studies show that DUX4 is a genetic bases of gene ate with considerable computer facility. Daniel Paul Perez, who major candidate for the expression. I started He started a search for “FSHD” using an invited her to an working on ICF, a human early version of Netscape (it would be upcoming FSHD pathogeneses of FSHD. Cur- syndrome connected many years before Google made Internet research meeting in rent work performed with DNA methylation, surfing easy for everyone). His search Denver, Colorado, to which is a form of epige- led the lab to the FSH Society website present her data to the at the laboratories of Dr. netic control in mam- and another online genomics database. entire FSHD research Rosa and Dr. Belayew and mals.” It turned out that Dr. Ding’s sequence community. During this period, was similar to a part of the D4Z4 ele- Dr. Belayew’s team several other laboratories Dr. Rosa was awarded an ment repeated in tandem at the FSHD continues to work on on DUX4, should rapidly international research locus. This D4Z4 sequence had been pro- this hypothesis. With scholarship by the vided to the database in 1994 by a team assistance from the increase our knowledge Howard Hughes Medical in the U.K. lab of Jane Hewitt, Ph.D. It FSH Society, she has about this mysterious pro- Institute and held posts was considered “junk” because it was reached clinicians who as visiting professor at repeated DNA segments and such have provided DNA tein and its potential role in universities in the U. S. repeated elements are found all over the and cells from and Europe, including chromosomes and are not considered to patients. Today she is FSHD. the laboratory of Judith contain any gene. However, Dr. Hewitt at the University of Melki, M.D., Ph.D., in had identified a putative gene coding for Mons-Hainaut (Bel- Strasbourg (France). Dr. a protein that nobody had described gium) and together with her co-PI, Melki directed the group that discovered before. Her team had made numerous Frédérique Coppée, Ph.D., and graduate the gene SMN1 (for the disease called attempts at finding any gene expression student, Eugénie Ansseau, she has finally spinal muscular atrophy). At the scientif- that would come from D4Z4, without demonstrated that FSHD muscle cells ic library in Strasbourg, Dr. Rosa found a success. Dr. Hewitt had found an open produced the DUX4 messenger RNA. Dr. copy of the recent thesis by Judith van reading frame with a double homeobox Belayew’s initial FSH Society funding has Deutekom, Ph.D. (Holland), concerning that is the “recipe” to make a protein but led to other grants from the Association the genetic characterization of the locus she was unable to find its promoter that Française contre les Myopathies, FSHD at 4q35. Upon reading the thesis, is the beginning of the gene. Dr. Hewitt MDAUSA and the National Institutes of he became fascinated with the scientific left this line of inquiry for lack of evi- Health. continued on page 5 FSH WATCH NEWSLETTER I WINTER 2008 5

DUX4 and FSHD, continued from page 4 challenge offered by a potential epigenet- of the FSH Society in Los Angeles, in discovery by Yi-Wen Chen, D.V.M., Ph.D. ic control underlying the pathogeneses of 2003. At that meeting, Dr. Rosa present- (see Fall 2007 Watch), who had a diffi- FSHD. Dr. Rosa realized that his back- ed exciting research news in FSHD: he cult time having her work published but ground of change in chromatin structure and Kowaljow had found in Argentina has experienced success jointly publish- in fungi would relate directly to FSHD that DUX4 is a toxic protein when ing with Dr. Belayew. Taken together, and could be a human disease model of expressed in cultured cells. They showed their studies show that DUX4 is a major his previous research efforts. Just a few that DUX4 is located in the cell nucle- candidate for the pathogeneses of FSHD. months later, his laboratory in Argentina us–a finding also reported by Dr. Current work performed at the laborato- began to offer molecular testing for Belayew’s group–and kills the cells by a ries of Dr. Rosa and Dr. Belayew and FSHD. His laboratory and that of Mayana phenomenon called apoptosis. Everyone several other laboratories on DUX4, Zatz, M.Sc., Ph.D., in Brazil, are the only at the meeting was excited by the should rapidly increase our knowledge sites performing molecular testing for research results, particularly Belayew about this mysterious protein and its FSHD in Latin America. and Rosa, who learned that their years of potential role in FSHD.! In January 1998, Dr. Rosa’s Ph.D. stu- work on identical hypothesis were pro- dent, Valeria Kowaljow, began exploring ducing important results. Dr. Rosa and 1Kowaljow V, Marcowycz A, Ansseau the potential pathogenic role in FSHD of Dr. Belayew decided to join efforts to E, Conde CB, Sauvage S, Mattéotti C, a putative toxic protein encoded by the continue studying the toxic effect of Arias C, Corona ED, Nuñez NG, Leo O, tandem repeat D4Z4 at 4q35. Based on DUX4. The FSH Society and the Associa- Wattiez R, Figlewicz D, Laoudj- his previous experience with the gene tion Française contre les Myopathies Chenivesse D, Belayew A, Coppée F, eth-1 in the fungus N. crassa, Dr. Rosa have supported both groups, including a Rosa AL. The DUX4 gene at the FSHD1A considered that an inherited dominant visit of Dr. Rosa to Dr. Belayew’s labora- locus encodes a pro-apoptotic protein. trait–as observed in FSHD–should not be tory in Belgium. Their joint efforts have Neuromusculcular Disorders, 17:611-23, explained by a “repressive” mechanism led to the confirmation of the apoptotic 2007. but based on a “toxic gain of function” nature of DUX4 mediated cell death. phenomenon, perhaps explained by They have also demonstrated that DUX4- abnormal epigenetic control of a gene in mediated toxicity is specific for this pro- Dr. Belayew has support from the a relaxed chromatin environment. A few tein–i.e., other proteins similar to DUX4 FSH Society William R. Lewis, Sr., months later, a paper (Gabriëls et al, do not have a toxic effect. Both groups M.D., and Family Research Endowment 1999) was published by Dr. Belayew’s had great difficulties getting their Fund; Dr. Hewitt is the recipient of the group proposing a similar hypothesis: research findings published independent- Delta Railroad Post-doctoral Research DUX4 may be a toxic over-expressed ly – but the paper submitted jointly was Fellowship Award; and Dr. Rosa has protein causing FSHD! accepted for publication in the journal held the Society’s Marjorie and Gerald Dr. Rosa and Dr. Belayew met for the Neuromuscular Disorders1. This also Bronfman Foundation Post-doctoral first time at the International Workshop happened in connection with the recent Research Fellowship Award in the past.

FSH Society Members: Reach Out to Others through Neurologists

s more information about FSHD If you would like to have materials to A becomes available, as the Society give to your neurologist or other physi- develops more educational materials, cian that introduce the FSH Society to other patients, contact Jennifer Lazzaro and as we anticipate new clinical trials, SHD we are eager to reach more patients at email: jennifer.lazzaro@fshsociety. x: F ls org R ria with FSHD and to work with their physi- or call (617) 658-7877. You will be ate e m labl cians. Patients continue to tell us about assisting patients, their neurologists and avai their difficulty in reaching a diagnosis. other physicians, and you will help to increase the FSH Society’s member- Can You Help? ship. You will also be helping to make The Society has developed an intro- faster progress in research, clinical trials ductory letter and package for neurolo- and clinical management. gists positioning the FSH Society as a If you have other ideas about how to resource for current information on reach more patients, or if you would like ing patient confidentiality. The surest FSHD as well as providing materials to have materials to make your own way to gain access to clinical trials, new that neurologists can share with contacts with patients, we can provide treatments and drugs is if we have a patients. We may also mail to neurolo- them. We need your help in reaching large, organized and reachable con- gists directly, but you are our best out to people with FSHD while respect- stituency.! ambassadors. 6 FSH WATCH NEWSLETTER I WINTER 2008 A New Generation of FSHD Researchers: Individuals with Personal Experience A Career is Charted: Driven to Help FSHD Through Research By Sarah Lamb Dystrophy Association (MDA) clinic. After the completion of my junior or years my father’s disease was Organizing pamphlets and flyers, I real- year, I was off to work in the laboratory F kept a family secret. Until recently, ized that if I wanted to have an impact of Michael Kyba, Ph.D., at the University even his mother-in-law and father-in- on FSHD patients I needed to do some- of Texas Southwestern (UTSW) Medical law, my maternal thing more. At first, I Center at Dallas after receiving UTSW grandparents, did wasn’t sure how I could Medical Center’s Summer Undergradu- not know that my contribute so I asked ate Research Fellowship. Upon arrival, I dad has FSHD. around and searched was warmly greeted by Dr. Kyba, Rita Although he faces online. Temporarily dis- Perlingeiro, Ph.D., and other members his disease every couraged by not finding of their labs. Along side two incredible day, for a long time anything, I immersed post-docs, Darko Bosnakovski, D.V.M., he chose not to face myself with school. The Ph.D., and Enzi Jiang, Ph.D., and a it with the communi- summer between my wonderful technician, Tugba Simsek, I ty. Nevertheless, sophomore and junior researched a gene likely to play a role in with the disease’s years of college, I was the disease. Although the research was, progress, this too at times, tedious and frustrating, the Sarah Lamb, recipient of a Summer awarded Rockhurst Uni- has slowly changed. Undergraduate Research Fellowship versity Deans’ Under- positive attitude of the lab members and I first became at the UTSW Medical Center, together graduate Research personal interest were more than aware of the dis- with Dr. Kyba and Dr. Bosnakovski, in Fellowship, and I con- enough motivation to continue research- ease when I was in the Kyba lab in Dallas, summer 2007. ducted research with my ing. Likewise, in the beginning, I was at fourth grade. Not biology professor, Laura odds as I did not understand why more understanding the Salem, Ph.D. In my tests were not being conducted to treat specifics and knowing that his father spare time, I volunteered in the emer- or cure FSHD. However, I quickly died at the age of 40 and other family gency room at a local hospital. The chal- became aware that in order to find a members had been affected, I became lenge of carrying out a research project cure/treatment, the molecular basis of angered at the medical world. Even together with the intensity of social inter- FSHD must first be understood. Even if though my mother worked in a hospital action at the hospital temporarily satis- my work in the lab only put a small dent as an R.N., I cringed whenever I saw or fied me. in the FSHD research, I am thankful to set foot in a hospital. Instead, I devoted With the summer behind me, I longed have been able to contribute, and I am my time to family, school, and softball. for another research opportunity, but this even more thankful to those individuals In school, I focused on science as it was time I wanted to research something I who study this disease day-in and day- the one subject that I never fully under- was deeply and personally interested in out. stood. When I wasn’t studying, my sis- FSHD. One afternoon, in the midst of the At one time, I worried that there were ter, dad, mom, and I spent our evenings fall semester of my junior year, I not any dedicated FSHD researchers. and weekends at the batting cages or received a pamphlet about Missouri’s After spending ten weeks in Dr. Kyba’s on the softball field practicing in Stem Cell Initiative and noticed that the lab, I no longer worry, but rather I am between games and tournaments. With MDA was one of the listed sponsors. grateful, thanks to his lab’s teamwork time, the daily softball practices outside Later that evening, I searched online and and effort. If anything, I have learned of the scheduled team practices, ceased stumbled across the phone number for that finding a treatment/cure for FSHD as my dad became weaker. the FSH Society. Although I had no idea requires dedication, communication, and A phone call from my mother during who I was about to call or what I would teamwork—all of which you will find in my sophomore year in college reminded or even should say, I picked up the Dr. Kyba and Dr. Perlingeiro’s labs. I me that my father’s condition was not phone and dialed, hoping for some sort have also learned more of the role of improving. She told me that he had of direction. On the receiving end was the FSH Society in encouraging and asked his friend of nearly twenty years Daniel Perez. After nervously attempting supporting young investigators. to help him out of a duck blind after to explain that I wanted to directly help Currently, I am completing my last telling him for the first time about his dis- battle FSHD through research, Mr. Perez semester at Rockhurst University and ease. She also informed me that he had advised me to send him a copy of my will graduate in May with a Bachelor of even discontinued duck hunting, one of résumé and, in return, he would distrib- Science degree in Biochemistry. I am his favorite activities, as it had become ute it to the laboratories active in FSHD also in the process of applying to med- too difficult to hold up his shotgun. With research. His kindness and generosity ical schools. My long term goals include this, I knew I wanted to do something for along with the support of William R. providing treatment, guidance, and hope my dad and for other FSHD patients. Lewis, Sr., M.D., and the FSH Society to patients along with researching Wanting to help support FSHD, I were more than I had imagined, and I FSHD. decided to volunteer at a local Muscular remain sincerely thankful. continued on page 7 FSH WATCH NEWSLETTER I WINTER 2008 7 A New Generation of FSHD Researchers: Individuals with Personal Experience

A Career is Charted, continued from page 6 Fortunately, my father has not given home for the holidays. As for keeping in to his disease as he continues to the disease a secret - that went out the Dr. Bosnakovski is the recipient of the enjoy several activities in his retirement. window after I spent my summer FSH Society Marjorie and Gerald Bronf- Although he has given up duck hunting, researching in Dallas and my dad real- man Foundation Post-doctoral Research he still deer hunts and also manages to ized that battling FSHD requires com- Fellowship Award. find miscellaneous projects for my sister munication and teamwork.! and me to take part in whenever I am

Two Sides of FSHD make the varsity teams in high thesis committee told me this project school, the disease, though would not work. I think most Ph.D. stu- By Ryan Wuebbles undiagnosed, was beginning to dents would have followed their commit- uring my 2nd year prelimi- have a profound impact on my tee’s advice and switched projects, nary exam, while present- D strength and abilities. As sports opting for a safer, sure thing thesis. ing a proposal to create an were such a large part of my Despite this, I believed in our scientific FSH muscular dystrophy youth, FSHD taking away my approach and felt the potential advances (FSHD) model in the frog Xeno- ability to play was particularly were worth the risk of failure. Fortunately pus laevis, I was asked the difficult for me to deal with in my stubbornness paid off, the project question “What motivates you Ph.D. candidate college. has proven to be a huge success and I to put your time and effort into Ryan Wuebbles I began college at the Uni- will defend my Ph.D. thesis tentatively this project?” The professor, conducting research, versity of Illinois (UIUC) plan- titled “Insights from FSHD-like frogs” this who had been hoping to catch University of Illinois at ning on pursuing a degree in spring. me off guard with this angle of Urbana-Champaign Electrical Engineering. Two I am not recognized as having FSHD. questioning, was surprised years in, I was diagnosed with FSHD. My 6-foot-4-inch frame, skinny build, when I quickly replied “I am an FSHD After struggling with the impact of this facial sparing, and the fact that it is rare patient,” effectively ending that line of diagnosis, I gave up that career track and to have to squat when meeting people, questioning. Motivation to help myself finished college with a Bachelors of Sci- means most people when meeting me and other FSHD patients, and under- ence degree majoring in chemistry. I have no idea I have FSHD. I have found standing both the challenge of research- knew I wanted to understand FSHD and the only time this presents a problem is ing this extremely complicated disease help FSHD patients like myself, and so I in stores with high shelves, where my and the impact the disease has on indi- decided to pursue a research track and height makes me an immediate candi- vidual’s lives gives me a unique perspec- attend graduate school. In 2002, I began date to ask for assistance getting items tive on FSHD. I am pleased to share this the Ph.D. program at UIUC in cell and down. Interestingly, this also holds true perspective with the FSH Society. developmental biology. Though FSHD for researchers in the FSHD field. In Having FSHD has shaped many deci- has stripped my ability to play most October, I attended the FSH Society’s sions in my life. Its influence ranges from sports, the confidence and work ethic I International Research Consortium in the mundane every day decisions such learned through sports has been chan- San Diego, representing a new lab in the as stairs versus elevator, or ride versus neled into my pursuit of a Ph.D. research field, where no one recognized walk, to the larger choices of living envi- My perspective on the FSHD field and me as anything but a researcher. It is an ronment, family, and career. In most motivation as a scientist are a combina- interesting feeling, hiding in plain sight. I cases the disease presents boundaries tion of being a patient as well as a FSHD was able to view this meeting as both a that narrow the number of realistic choic- researcher. I joined a lab whose expertise researcher and a patient. It was exciting es; however, it has positively shaped my was epigenetics because FSHD patholo- to see all the new advances towards choice of career. gy is widely considered to stem from dis- understanding FSHD. I grew up in Livermore California, rupted epigenetic regulation. However, As our understanding of FSHD pro- extremely athletic, playing soccer, bas- the lab uses Xenopus laevis (African gresses through open-minded research ketball and baseball year round. My love clawed frogs) as a model organism so I pursuits, we come closer and closer to of sports continues to this day and is decided to branch out in my research and the ultimate goal of a cure. I’m just glad perhaps best exemplified by the fact that investigate FSHD pathology by develop- that I can be a part of it.! at the ages of 10-13 due to overlapping ing an animal model using frogs. It was seasons I was involved in two basketball my hope that a novel research direction Meredith Hanel, Ph.D., Wuebbles’ teams and a soccer team for several would bring new insights into the disease. colleague, is the recipient of the FSH months, and went to three practices or However, our lab quickly found out that Society Landsman Charitable Trust Post- games a day. I continued sports through there was no interest in or funding for doctoral Research Fellowship Award. high school, and although I managed to generating frogs with FSHD. Even my 8 FSH WATCH NEWSLETTER I WINTER 2008 An Overview of Anesthetic Concerns for Persons Diagnosed with FSHD

By Raymond A. Huml, M.S., D.V.M., R.A.C. description, with websites, avail- press respiratory drive with narcotics. able to give to the medical per- Oxygen supplementation can be detri- Introduction sonnel. The FSH Society can also mental to patients with hypercarbic (high act as a resource in providing CO2) respiratory failure and lead to became part information and fact sheets. worsening (i.e., higher) carbon dioxide of the FSHD (CO2) levels. Oxygen should generally I The basic anesthetic concern for all family when my not be administered unless BiPAP or persons with neuromuscular diseases, daughter was similar ventilatory support is also being including those with FSHD, is that the diagnosed with used. respiratory system, due to a weak FSHD at Duke diaphragm muscle or chronic response ! During the 15 minute ambulance University’s to elevated carbon dioxide levels, can be ride to the ER with my daughter, I Muscular Dystro- additionally compromised with oral, intra- found it impossible to convince phy Association venous or inhaled drugs (or even the the EMS staff that oxygen supple- Raymond A. Huml, Clinic in 2003. inappropriate use of oxygen). For exam- mentation was exacerbating the M.S., D.V.M., R.A.C. Since that time, I ple, muscle relaxants, like valium, can symptoms—especially since there have liaised with suppress respiratory function by compro- were no obvious signs of respira- the officers of the FSH Society, genetic mising the diaphragm, and opioids (for tory insufficiency—like increased specialists at Duke University and other pain), while not directly affecting the or labored breathing or blue lips – academic and medical centers in order lungs, can have central (i.e., brain) and normal pulse oximetry read- to better understand the disease and its effects that can compromise the respira- ings. progression. While I have come to tory system. understand that, as yet, we cannot Respiratory insufficiency can occur in Your physician and pulmonologist change FSHD genetics or cure FSHD, I all persons with FSHD. However, evalu- can help you periodically monitor CO2 do believe that some potentially life- ation of the symptoms and signs of res- levels in the office or evaluate pul- threatening situations for persons with piratory insufficiency during routine clinic monary function in the hospital, or even FSHD can be minimized or eliminated. visits is probably more important in by a nocturnal oxymetry study. The tim- After a recent trip with my daughter, patients with moderate to severe FSHD. ing for the periodic monitoring of pul- by ambulance, to an emergency room The first pulmonary visit can be used as monary function will be determined by (ER) for a suspected seizure, I have a baseline tool; subsequent visits can be the results of the baseline visit, any new come to the conclusion that every per- used to determine if pulmonary function clinical signs, you, your pulmonologist son with FSHD and their caregivers is changing over time. and your neurologist may discover. should be prepared to give details about FSHD and key potential anesthetic com- ! Elective surgery, surgery for plications associated with it, while in the After meeting with a pediatric ER, the intensive care unit (ICU) or prior neurologist with my daughter as a dentistry, or surgery that to elective surgery. follow-up to the ER visit, I dis- allows some planning time This article will explain and examine cussed my concerns regarding anesthesia, and we agreed it several key anesthetic concerns for per- Anyone having surgery should be would be prudent to get a base- sons with FSHD and is intended to aware of the risks associated with the line pulmonary function exam. encourage those with FSHD (or their surgical procedure and/or complications caregivers) to be proactive in providing that may arise during and/or after it. information about FSHD to those provid- Regular monitoring of respiratory While certain risk factors are increased ing medical care. It is not intended to function is important because insufficien- in people with FSHD who undergo anes- serve as medical advice. cy can occur gradually, over a long peri- thesia, each individual is different and od of time without clinical signs. reactions to anesthetics may be differ- Anesthetic concerns Symptomatic respiratory insufficiency ent. As with all medical procedures, you can initially be managed with night time should talk to your physician about the Even within the high quality medical non-invasive pressure support like a Bi- specifics of your case and what you care system in America, not all medical level Positive Airway Pressure (BiPAP) should anticipate and hopefully have staff—including nurses, residents, and machine which helps get more air into baseline data available for physician interns—are familiar with muscular dys- the lungs. In severe cases, FSHD review – like pulmonary function data. trophies and neuromuscular diseases. patients may require the use of invasive The following is a brief description of mechanical ventilation. ! complications that may occur among Regarding my recent trip to the In standard practice, trauma, ER, people with FSHD who have surgery. ER, it would have been helpful to ICU, surgery and anesthesiology set- have a laminated one page tings, care should be taken not to sup- continued on page 9 FSH WATCH NEWSLETTER I WINTER 2008 9

Anesthetic Concerns, continued from page 8 lent amongst people diagnosed ! what types of pre- and post-oper- Complications from anesthesia with moderate or severe FSHD. ative measures should be taken ! You and your caregiver should to lessen the likelihood of compli- While this list is not exhaustive, com- be an informed participant in any cations. plications in patients with FSHD who surgical procedure. have had anesthesia during surgery can ! It is prudent to learn more about For patients with FSHD who have include the following: the respiratory implications of not had these tests performed earlier, anesthetics before they become ! these pre-operative tests are recom- respiratory distress, a problem. ! mended: rhabdomyolysis (muscle degener- ! Being aware of the potential com- ation), ! plications that may be associated ! cardiac complications, baseline pulmonary function test- ! ing, with the use of anesthesia with myotonia (decreased ability to ! FSHD and discussing the risks relax the muscles), baseline neurologic testing (clini- ! cal or diagnostic like EEG), and and benefits with your physician generalized muscle spasms (par- ! before choosing a particular pro- ticularly the jaw muscle), and baseline cardiac testing such as ! an electrocardiogram (ECG). cedure is the best way to prepare hyper and hypothermia (abnor- for surgery or an emergency mally high and low body tempera- Identification of a potential room visit and to keep risk at a ture). minimum. problem to medical persons ! Review estate planning docu- Some of these complications appear ments to insure that they are to be related to the symptoms, severity Without a caregiver present or the consistent with the medical inter- and stage of FSHD, while other compli- ability to speak coherently, medical per- vention you wish to receive if you cations, such as respiratory or heart sonnel may not know that you have are unable to communicate.! problems, appear to be related to sec- FSHD. FSHD patients should take care ondary conditions. For example, while with their advanced medical directives rhabdomyolysis appears to be a compli- and health care proxies to be sure that cation related to NMD symptoms, the “do not resuscitate clause” does not breathing problems are most often put them at risk. associated with a respiratory problem Use of a bracelet, necklace, etc., References: that is secondary to the muscle weak- from MedicAlert (or a similar service) 1. Klingler W, Lehmann-Horn F, Jurkat-Rott ness caused by the disease process. will notify medical personnel to potential K., “Complications of Anaesthesia in Neu- There are no definitive ways to com- romuscular Disorders.” Neuromuscul Dis- problems associated with FSHD. A USB ord. 2005, Mar;15(3):195-206. Epub 2005 pletely alleviate all risks; however, there flash memory drive with medical files (in Jan 28. Department of Anaesthesiology, are several precautions, like pre-opera- PDF or MS Word formats) is an alterna- Ulm University, Albert-Einstein-Allee 11, tive testing, that physicians can take to 89069 Ulm, Germany. tive way to transport medical information 2. Halsall and Ellis. Anesthetics, Academic lessen the likelihood of these complica- in a purse or pocket. Unit of Anesthesia, St. James University tions. On the other hand, use of a bracelet Hospital, Leeds, The United Kingdom, or necklace in adolescents can be prob- FSH Watch, Spring 1998. Pre-operative testing 3. Respiratory Therapeutics in Neuromuscu- lematic because, at this age, it identifies lar Disease, NMDinfo.net at http:// the person afflicted with FSHD to a non- disability.ucdavis.edu/report_retrieve.php? One way to prevent or alleviate com- targeted (e.g., non-medical) audience. It Report=0029x accessed November 15, plications from surgery in individuals may be possible, in lieu of a bracelet, to 2007. with FSHD is through pre-operative test- 4. Personal communication: Perez, D. Presi- carry such identification card in the wal- dent and CEO, FSH Society, 2007. ing. These tests may or may not be let or purse. 5. Personal communication, Abresch, RT. done based upon the information Director of Research, Center for Neuro- already contained in your medical Conclusions muscular Disease at UC Davis, Davis, records (i.e., symptoms and severity, CA, 2007. whether or not you are known to have ! Not all medical personnel are heart or respiratory problems, etc.). If well-informed about FSHD or your physician does not have sufficient may not know that you have information, she/he may run a variety of FSHD unless it is communicated Editor’s note: tests (see below for examples of pre- to them either verbally or via a operative tests) to determine: MedicAlert-type device. This parent raises important con- ! Persons with FSHD manifest a cerns especially in his call for more ! what types of anesthetics to use wide variety of clinical symptoms information to provide medical person- (i.e., local vs. regional vs. general), of the disease. nel. The FSH Society will prepare a fact ! what drug combination to use for ! There are some complications of sheet to be carried by patients and their anesthesia, and anesthesia that are more preva- families. 10 FSH WATCH NEWSLETTER I WINTER 2008

International Research Consortium in San Diego, October 2007

he annual FSH Society Internation- private funding and in international col- tional character of studies, the desire for T al Research Consortium (IRC) laboration of volunteer health agencies pre-clinical and clinical developmental workshop was and FSHD patients. markers, reality of the political landscape held in San Diego Some of the highlights of the of the study of various genes, the contin- on October 23, 16 presentations and 5 poster uing need for a natural history of the dis- 2007. The FSH presentations were: ease and a means of stratifying patients Society FSHD A revival of DUX4 was for trials, an FSH Society website for IRC is a satellite shared; evidence of slowly researchers, and a call for more event to the uncovering the function of resources. This was a lively and produc- American Society FSHD Region tive discussion in which of Human Genet- Gene 1 (FRG1) FSHD issues were open- ics (ASHG) Annu- was documented; ly discussed with the al Meeting. and important objective of a new and Approximately clinical studies better future for patients sixty researchers The Society was also present in the were covered. with FSHD. Researchers from around the ASHG Exhibit Hall. Volunteers Substantial evi- unanimously agreed that world attended to Amy Bekier and Alan Schreer, Tom dence was pre- this was one of the best discuss FSHD Dempsey, and Jay Bass (with occa- sented that FSHD Society IRC meetings to research and sional relief from Howard Chabner, may be consid- date. solutions for Michele DeSha, and Nancy Van ered as a “chro- This meeting was Zant) staffed Booth 1117 and FSHD, despite matin disease” sponsored by the FSH reported a very interesting experi- and the consor- Society, the Association the adverse con- ence in representing the FSHD Nancy Van Zant and John D. tium was educat- Française contre les ditions of fires community. Jay Bass and Amy Porter, Ph.D., Executive Secre- raging in San Bekier are pictured here. ed on new tary, Muscular Dystrophy Coor- Myopathies, the Muscu- Diego County. Photo by Alan Schreer. genetic develop- dinating Committee (MDCC), lar Dystrophy Associa- The presence ments in 4q- National Institutes of Neurolog- tion USA and Athena ical Disorders and Stroke, stop of these investigators and the platform linked FSHD and Diagnostics. Silvere van non-4q-linked FSHD. by the FSH Society booth in the der Maarel, Ph.D., presentations is validating evidence to ASHG Exhibit Hall. the community of rapid developments on The day concluded with William R. Lewis, Sr., numerous fronts in FSHD. We are seeing a roundtable discussion M.D., Rabi Tawil, M.D., increasing momentum in basic and clini- about the future of FSHD investigations. and Daniel Paul Perez organized and cal research initiatives as well as the Individuals offered a number of observa- chaired the meeting. development of promising, potential tions about future directions and focus: To review more of the day and treatments for FSHD and other muscular the need for good muscle cells for abstracts of presentations, please go to dystrophies. Additionally, there is an research, consideration of retinal vascu- www.fshsociety.org for the complete increase in government, non-profit, and lar studies, more attention to the transla- program.!

One Lap for the Society: Tire Rack Cannonball One Lap of America to Raise Funds and Awareness for FSHD

By Jeff Jacobs and Udo Horn title sponsor of the event) in South track too early, they get fined points (for he 25th anniversary running of the Bend, Indiana, and embark on an esti- exceeding the speed limit). This proce- T Tire Rack Cannonball One Lap of mated 5,000 mile trip through the U.S., dure is followed for the whole week, at America is set for May 3 through 10, stopping at racetracks every day. When the end of which overall and class win- 2008. Jeff Jacobs, whose daughter Lauren they get to the track, the vehicles run ners are determined. was diagnosed with FSHD in late 2005, two or three timed laps on the track, one Jeff will drive with Udo Horn, a vin- has been preparing to participate in this car at a time. The cars earn points based tage car enthusiast Jeff has known since event for the past 18 months. on their fastest lap times. After the laps 1992, when Jeff moved to Maryland. Udo The cars and their drivers leave the are run, the cars and drivers take off for is one of a select few individuals who the next track. If the cars get to the next Tire Rack Headquarters (Tire Rack is the continued on page 11 FSH WATCH NEWSLETTER I WINTER 2008 11

One Lap for the Society, continued from page 10 have earned the honor of being members This car has been prepared with safety, Donations: of the Bonneville 200 MPH Club at the comfort, and reliability in mind. In order Jeff is asking his friends to make a Bonneville Salt Flats in Utah, setting a to finish first, you must first finish! pledge to the FSH Society based on the two-way record for his class of 231 MPH. estimated 5,000 miles driven during the Jeff and Udo have successfully shared Promotion: event—from South Bend through Wis- driving duties in many vintage endurance The car will consin, Iowa, Texas, races, driving mid-60’s Corvettes, a be towed round Louisiana, South Caroli- Trans-Am Camaro, and a vintage trip from na, Virginia, Pennsylva- NASCAR Pontiac Grand Prix. Arnold, Mary- nia, and back to South land, to South Bend. Gifts will be sent One Lap of America Rules: Bend in an directly to the FSH Soci- Minimum of two drivers per car enclosed trailer ety. One Lap supporters entered. Vehicle must meet all safety which will be a may request that their requirements. Vehicle must be legally traveling bill- gifts be used where they insured and registered. All motor vehicle board for the are most needed by the laws of states through which the vehicles FSH Society and Society, or they may des- are driven must be obeyed. FSHD awareness. The car, which is near ignate that fulfilled pledges be used for show quality, will be driven from South research. The Car: Bend for the 5,000 mile trip around the If you would like more information Jeff and Udo have been preparing a country, and once again it will be pro- about the One Lap for the FSH Society, 1970 Camaro which would run in the Vin- moting awareness of the Society and please go to the Society’s website. ! tage/Classic American class in the event. FSHD.

FSH Society — Annual Donor Report 2007 — February 2008 one of the leading issues of our time. The lives to understanding how the disease field of biomedicine works, is moving rapidly toward treat- Dear Friends, offers more opportu- ments for patients and to finding a cure. In 2007, the FSH Society concluded nities to enrich The list that follows includes all our most successful fundraising year human life today than donors to the FSH Society in 2007. We ever, raising nearly $825,000 from gener- at any time in our his- hope you will continue to support this ous friends like you. tory. We are opti- work by joining the Society again in You helped the Society make impor- mistic that the 2008. tant progress. Thank you for supporting community of FSHD Sincerely, advances in research, education and out- investigators, a reach, and advocacy. remarkable group The study of diseases like facioscapu- who have committed Nancy Van Zant lohumeral muscular dystrophy (FSHD) is their professional Gifts to Membership, Research and Education $100,000+ Delta Railroad Construction, Inc. The William J. Conners, III, and Marjorie and Gerald Landsman Charitable Trust Barbara S. Conners Charitable Bronfman Foundation Tides Foundation Foundation Duncan and William R. Lewis, Sr., M.D. Goldman Sachs New York Community Trust $5,000–$24,999 Jeffrey W. and Christine Jacobs Anonymous Steven and Vickie Kurtzman $50,000–$99,999 Association Française Sanford L. Batkin William Lewis, III, M.D. contre les Myopathies Stuart Lai William and Virginia Michael Harriet and Fred Cartoun Foundation, Inc. Carol and Charles Perez $25,000–$49,999 Barbara and James Chin Helen and Marc Younger Anonymous Combined Federal Campaign -- CFC continued on page 12 12 FSH WATCH NEWSLETTER I ANNUAL DONOR REPORT 2007 I WINTER 2008 Gifts to Membership, Research and Education $2,500–$4,999 Terry Dole JoAnn Forance Ellen and Irving Barocas Anonymous Howard and Carol Fine Harold and Louise Frakes Horace Barsh Dr. and Mrs. Gary S. Cohen Susan Freedman Kenneth and Shirley Fuhrman Fletcher E. Barton Betsy and Joe Conron Carlos and Beatriz Garcia Rebecca G. Fulmer Gale V. Batchelder Grace Corradino Carlos and Mimi Garcia Joseph and Kathleen Gianotti Catherine Bauer Emelina Fa and Hon Lee Anne Marshall Gillespie Leonard Gilman Ron and Sharon Baxter Patricia and Warren Gelman Stewart and Rochelle Grill Global Impact BDO Seidman, LLP Judy Marantz and William Patricia and Charles Gullage Neil Gorter Beachcomber Herzberg, M.D. C. Richard and Jill Hall Ranae N. Beeker Charles Kreiner, Jr. Dorothy Hardesty Bane and Julie Hereford Amy Bekier and Alan Schreer Roy B. Neilson Glenn and Petrina Hasman Ruth Hereford Charles Bell Suzanne and John Stekly Karen Hixon Lisa and Michael Heyison Geoffrey Bello Christopher Stenmon Col. Robert E. and Robert Hixon Jeffrey and Ellen Berger William Wittenberg and Betty B. Humphreys Vivian Irwin Louis Berke Deborah Halber Terry and Kathleen Huser J. D. Brown Corporation Ann and Michael Biggs-Williams Isabel and W. Craig Jeffares Laura Kampa Arthur Walker Bingham, lll $1,000–$2,499 Barbara Kim Stanley and Linda Kaye Barbara and Robert Birnbaum Anonymous John and Donna Kirtz Ruth and Daniel Krasner Robert J. Bloch Athena Diagnostics Ulrike Kjellberg Russell Lai Janelle L. Blom Fabiola Bertinotti Florence Koplow Kenneth Lerner and Jonathan Bloom Merrill Block Richard and Linda Lefebvre Katherine McDowell Andrea Borsuk and Philip and Barbara Borsuk Deborah and Rick Levinson Donald and Judith Lokerson Frank Thaler Stephen L. and Jane Bradford Marilyn Young Liu Joyce and David Miller Marie Bortone Don Burke William A. MacLean Harry Mulholland Barbara Bowden Howard Chabner and Ann Marie McKenney Linda Mullins Edward and Elaine Boyle Michele DeSha Merck & Co., Inc. Jai Narayan Lawrence and Lisa Boyle Thomas Dempsey Mary and William Morris-Kelly Dr. and Mrs. Edward A. Norris Ernesto and Connie Brauer Denney Electric Supply Network for Good Martha and Donald ONeal Mannie and Avis Brenner of Amber, Inc. O’Connor and Drew Marianne Partridge Kenneth and Jean Bridges Carl and Pat Dispenziere Ronald Olson Kevin Pellerin Stanley and Judith Broadwin John Freedman and Lisa Cohen Sandy and Anita Pensler PepsiCo, Inc. Garrett Brown and Ellen Shire William E. Hall, Jr. Daniel Paul Perez Shirl Lee and Sheldon Pitesky Peggy and William Browning Ephraim and Karen Heller John and Lynn Peterson Joy and Richard Richards David Brownstein and Philanthropic Fund Susan and Stefano Pogany Elaine Rosenberg Grace Shohet F. Peter Herzberg, M.D. Raytheon Company Robert and Constance Scharf Rikki Bryant and Eric Brenner Hewlett-Packard Company Doris Richard Elizabeth F. Schrauder Jane Buchanan IBM Edward and Betty Schechter Kenneth and Judith Seslowe John Budesa Magdalene Kuntzelmann Jay Schechter Roger Smith Janice and Mark Caldwell H. Michael Kurzman Susan Stewart Timothy Smith and Deborah and Bradley Calhoun Marilyn and Neil Kutin John Taylor Cassandra Nisbet René Carballo George Kuykendall Nancy and Kent Van Zant George Speisman and Deidre Cavanaugh William and Jane Mathias Vancouver Neurologists P.S. Anne Stanner Ray and Helen Cavanaugh Roger Miles VML Foundation Christopher Spillane Bernard and Joyce Chabner Merrill Lynch Bettina G. Welsh Stephanie Staley Jean H. Chandler Muller Family Foundation Glenn and Colleen Wing United Way of Barbara Chatman Virginia Padberg Michael and Katherine Woloshin Central Carolinas Justin and Jason Chow Mike Rowlett United Way of Joseph Chrapek Jacqueline Savoy $250–$499 West Chester, PA Mark and Renee Christman Leonard Schwartz Anonymous Doris Walter Diane Clancy-Griffo Ted and Mary Jo Shen Robert and Linda Alperin Henry Wiggin Paul and Annabelle Closson Allan Silverstein Family Ameriprise Financial Sara Winokur, Ph.D. Club 58 Foundation Anheuser Busch Cyrina Wolf Daniel F. Cooley Carolyn and Dr. Ted Staton Jeffrey and Barbara Bache Guy Corter United Airlines Foundation Scott and Amy Baker $100–$249 Judith Cotler Constance and John Walsh, III Greg Bazan Anonymous Courtney Hilliard, P.C. Maddy and Bellagio Hair and Skin Care Gloria Abramowitz Marla and Michael Craven Dr. Lawrence Weinstein BNJ, Inc. Sandra and Charles Adams, Jr. Francis Crompton Drs. C. Brennan and W.E. Carlson Michael and Ellen Aeling Amanda B. Cross $500–$999 Jerilyn and Gerald Blom Joseph and Laurie Albunio Erin Cummings Anonymous Peter and Nancy Carrothers Archie Alexander Pauline and John Cuoco Victor and Susan St. Amand Yi-Wen Chen and Poching Liu Marissa Alperin and John Lane Laurie and William Daniels Bear Creek Elementary, Stuart and Harriet Cohen Michael Aquilino Dennis and Lois Darst Baltimore, MD Josh Comfort James Armour Richard Davey and Jane Willis James and Pamela Boyer G. Alan and Leslie Comnes Allen and Susan Artmann Richard and Joan Davis Carolyn Brink and Crosshaven Partners, LLC Harry Aschkinasi Allen Dawson Kenneth Raak James and Jessie May Davis Kathleen Aument Claude Desnuelle Buffalo Rides, Inc. Benjamin and Barbara Denney Baalibabes Dance Cooperative David DiIulis Walter W. Cheney Rosalind Devon Nancy Baer Thomas Dini and Michael Closson Jan and Mark Elman Bijan Bakhtian Rena Jo Storti Elaine Disick Donald Ferris H. Douglas and Rena Donovan Deborah Divine Mr. Charles M. Fitts, Jr. Dee Dee Barclay Don Drinkwater Gifts received January 1, 2007 to December 31, 2007 FSH WATCH NEWSLETTER I ANNUAL DONOR REPORT 2007 I WINTER 2008 13 Gifts to Membership, Research and Education Shawn Duley Linda Kelley Petrikin, Wellman, Damico, Monti and Stewart Staton Sally Petit Dunlap Julie Kelly Brown & Petrosa Julie and Kurt Steinkrauss Sharon Anderson Earl Pauline A. Kelly Larue and Caroline Pfeiffer Donald and Muriel Stern Kathryn Ecenbarger Linda Ketelaar Anton and Marilyn Plonner Nancy and Jim Stricker Jennifer Egert Mac Kieffer and Susan Bloom Jeannette Polhamus Janet A. Sullivan and Mollie Egert Robert B. Kirsch Nicholas Poolos and Edmund Cuoco Stephen and Jennifer Elia Sherwin and Betty Korey Harriet Saxe John Sullivan Howard Ellis Jilayn Krohn George and Judith Porreca Anu Swamy Audrey Falk Robert and Angela Kupps William and Katherine Porter Nancy and Lawrence Taillie Georgia Farman Hanna Lachert Margaret and Michael Powers Norm and Amy Tamkin Lora and Frank Ferguson Raymond Laforest Albert H. Quigg Stephen Tarter Michael and Marie Ferragamo Lincoln Lai Armando Quiroz Kathryn Thyret John L. Ferullo Amy and Joseph Lally Lisa and Michael Radin Alain Thys John & Patrice Ficociello Kathy Landig Lane and Paul Raskauskas Margaret Toews Barbara Finlay Donna LaRoche Mary F. Ray Heather and Samuel Tomasetti Jason Forish Jonas Larsson Syrus Rayhan, M.D. Paul Tompkins Karen Greene Frazier Paul Laurello Marilyn Z. Reafsnyder Jennifer Valentine Rick and Leslie Frye Brett Leake Lois Reed Bridget Valeri Robert and Ledisco, Inc. Edward Rees Stacey Vallas and Annabelle Galumbeck P. N. Lem Seymour and Barbara Regal Reinier Warschauer Linda and Carl Gillespie Francis Leone Ellen Ressler Susannah Van Dyke Samuel Gillespie Cindy Lesiak-Lowrey Reed Reynolds Sheila A. and William Vaughan Sandra Goldfarb Peter and Susan Ley Ricky Smith Pontiac-GMC, Inc. Joseph Walker Alan and Harriet Gordon Liberty Lighting Group, Inc. Robert E. Riggan Wareham Ford John and Angela Grech Gregg A. Lichtenstein James L. Riley Sandy Weeks Mrs. Angela M. Grech Helmut and Maria Lippert Stephen and Laura Rinehart Marvin Weiner Suzanne and Richard Gregorio Lawrence and Agnes Liptak Laura Ripepi Ernest Weiss Gene and Jeanne Grindlinger CJ Lucas Ronald and Michelle Robbins Hillary Wenner Colleen Grubb Paul and Kathy Lucero Serena C. Roberts Rosalyn and Judd Wenner Erin Gullage Paul and Lori Lucero Jeff Rogers Connie L. Westadt Marcella and James Haas Donna L. and Wayne W. Lucier Lisa & Marvin Rosenbaum George and Gladys Weston Howard Haberman and Lulu’s Gift Judith and Allan Rosenblum Robert Wetherbee, M.D. Martha Lybarger Elizabeth Maas and W.D. and Judy Ross Mark and Danise White Lesley Haines James Olson Charles Rowland Robert and Bonnie White Nancy Harding Joanne P. Maguire Jim and Brenda Rowland Jeffrey and Christiane Wiese Ann Hardon Cindy Marano Abir Roy Martha Wile Phillips B. Hardy Anna Marantz Robin Rue Barbara Wing Anne Harland Myra and Marvin Marantz Charles Sage, Jr. Timothy Wondolowski Pat and Bob Hauser Scott Marantz and Jennifer Salamone Donald and Barbara Wuebbles Lorraine Hayden Susan Laskoff Kelly and James Sanderfoot Michael York Eric R. Heiberg Joseph and Sarsfield, Inc. Mr. Zahorchak Patricia Hennessey Bonnie Colombo Marnikovic Kendra Saunders Robert and Tracye Zlobl Steven and Linda Hill Linda Mason Randy Schafer Gill Hilton Thomas and Glenn Schanel $50–$99 Judith and Everett Hirsh Dr. Elizabeth Massella Claire Schechter Anonymous Ruth and Alan Hirschberg William Mc Gugan Schering-Plough United David and Ann Adams Henry and Susan Hoffman Harry J. McGovern Way Campaign Phyllis Allison Judd Hoffman Bernadette McNulty Mitchell Schoenbrun Philip Ambrosino Gregg Hollander Marilyn Meisel Evelyn Schuster Anthony and Elvia Andrada James C. and Andrea Holleran Michael P. Metke, M.D. Deborah Schwartz Steve Angelini Christine P. Holmes Mary Ann and Ronald Michael Elaine T. Schwartz Emilie Athanasoulis Richard Holmes Mary Mills Ella Schwartz James and Carolyn Baker Eric and Karen Hubler Gwen M. Moore Keith Scribner Toby Berkeley David R. Huck Morgan Stanley Appeal Paul and Elaine Seymour David and Mike and Kate Hurley Ed Morris Paul R. Shay Jenifer Romney Blackner Beth Hutchins and Pete Skeggs James Morse Carla Shen Brittany Blumhardt Irish American Club, Inc., F. Reed and Dorothy Murtagh Gregory Shenk Nichole Bousquet Woburn, MA Janet Narayan Yefim and Rima Shutin Martha Bowditch J & L Construction, Ltd. National Football League Gerald and Pearl Siegel Paulette Brantley Carla Jacobsen Carole Jane Nelson Dr. and Mrs. Seymour Siegel Juli Bray-Morris Shelley Jacobsen Richard Nelson Steve Sirota Frank and Dolores Bridges Sam and Li-Su Javedan Havuva and Jacob Ner-David Michael and Stephanie Smerling Clement Brooke, III JLMP, LLC Jon and Gwen Nese Joan Smith Miriam Brown Cheryl A. Jones Edward and Melissa O’Dell Robert and Patti Smith William Brown, III Johnson & Johnson Doris Olds-Eck Steven B. Smith Kevin and Wendy Burke Shawn C. Johnson Harry and Karen Orf Ethel and Gerhard Spiegler Denis and Anita Calverley Jeff and Beth Johnston Gerald Organ SSE Products, Inc. Bruce Campbell and Ray Jordan Celia Orre Russell Stamm Dawn Strickland Abbott Kagan, II Michael Pace The Standard Edith and Bruce Campbell Seymour and Lola Kamp Scott Pace Linda and Kevin Stapleton Thomas Carlo Sander and Lana Karp Howard and Nancy Perkson Jean S. Staton, M.D. Lauren Carnes Gifts received January 1, 2007 to December 31, 2007 14 FSH WATCH NEWSLETTER I ANNUAL DONOR REPORT 2007 I WINTER 2008 Gifts to Membership, Research and Education Lorraine Casler Alan and Lynn Kaplan Glenn Pilipski Other Christer and Laurel Cederberg Miriam Kaplan Carol Prusse Anonymous Barbara Chabner and Margaret Katz Linda and Frank Pulskamp Lawrence and Marshal Datkowitz Barbara and Joe Keefe Suzanne and Michael Quigley Adele Abramovitz Pauline Chusid and Patsy R. Kell David Quinn Donald and Susan Abrams Jerry Williamson Maureen Kelly Paul and Janis Rasore Jack and Lois Abramson Mary-Lou Cohen Henry J. and Kathleen Kelman Edward Reed Ronda Adams Mary and Eugene Cookson Meredith Kench Clinton Reiser Robbin Aleskivitch Leslie Crompton Paul Kennedy Peter Rennick Maurice Allen Andrew Csabi William and Odette Kent Dr. and Mrs. Hector Retik Duane Anderson John and Antoinette Cuoco Jason and Lisa Keshishian Patricia and Paul Reynolds Norman and Sandra Arky Leandra Dean Gary and Jilleen Kimball Beverly and Jim Rice William Armstrong Crystal and John Deinhart Gary and Susan Klaiss Joseph Richardi Dale Arrington Kenneth DeLong Brent Kostelnik Darryl and Wendy Richards Hartmut Bader Lydia L. Denworth Deborah A. Krebs Michael and Sharon Richardson Courtney Banks Cheryl Devlin Eileen Kulpinski Stephen Riden Richard J. Barohn Robert and Denise Devoe Bernard and Jana Kuntzelmann Ruth and Ernst Rinder William and Jennie Barratt Mary Ann and Anthony DiCeglie Marie and Ellis Lader Natalie Rivers Jeffrey and Eileen Barthelmes Thomas Doherty Richard J. Lane Joan Rockhill Jay Bass Clyde M. Dole Susan Lauren Mikhail, Adelaine and Paul and Regina Batson Daniel and Celia Dosoretz Deirdre Leech Israel Ronkin Lillian Battles James and Susan Dowd Rose and Adam Lembo Robin and James Roush Joseph and Jane Bendavid Leslie D’Sa Dawn and P.J. Lennon Michael A. Rozman Dorothy Benullo Wallace and Sarabel Dunlap Susan and Lester Kaufman Debra Rubinsohn Doris Berg Michael Dupuis, Sr. Shelley Long Jeanne Rulli Greg and Tanya Bergstein Howard P. Eaton, Jr. Losc Grace Ryan Flora Berk Mr. and Mrs. Paul Ferguson Marilyn and William Love Paula Ryan David and Charlotte Bernstein Jennifer and Joseph Fertucci Rafaela and Herman Lucero, Jr. Mark and Helga Saitowitz Nicole Bingham and James F. Fo Robert Lueking Glen D Sawyer Stephen Wright Morton Frank Martin Lundy Steven Schennum Maria and Kenneth Bishop William and Danielle Franz Brian Luoma Schering Plough Kathy Black J. Leonard and Janice Freed Eugene and Kathie Luoma Roberta B. Schoenfield Richard Blandino Theresa Frizzell Ryan and Shannon Maguire Thomas and Cynthia Schott Carol Blank Gregory and Elisabeth Galef Calvin and Myra Marantz Patricia Schroeder Debbie Block James Gavin Philip and Susan Marantz Janice Schulman William & Katherine Bolster Michael Gazzara Linda and Paul Maregni Scott and Lois Schultz Ronald and Elizabeth Brennan Frederick P. German Joseph J. Matt, III Edith Schwartz Laure Bridges Wilhelmina Gibler Debra Mazzaraco Stewart and Gina Scribner Mary Bridges Glenn and Janet Gibson John and Denise McHenry Drs. Ernesto and Mirta Seldman David and Beverly Brittain Erin Gibson and Matt, Gabe, Jennifer and Jeff McInnes William Senter Robert Brodsky, M.D. and Elizabeth Szybalski Douglas and Jane McKenna Sherr Financial Associates Helen Brookland Janice Gilligan Elizabeth and Paul McKenney Mr. and Mrs. Joseph Sherr A. Leonard and Susan Brooks Eileen M. Gilman John and Maureen McNamara Catherine and Gary Shiers Alan and Rona Brown Ernest and Lois Gilman Roberta and Mark Meads Gary and Kathleen Shimmel John P. Bryson Donna Glass Elizabeth Terlingen Merkle Rod and Leigh Shuster Joseph Bryson Ray Gooden Cathy May Miller Florina Shutin Shelia Buckingham GoodSearch Alicia and Bryan Mills Ralph W. and Marilyn Skiles Bill and Ann Burke Fredric and Lynda Gordon John and Judith Mills Gerald and Joanne Smith Sally Burns Deborah A. Grant Janice Minten Eleanor Soll John D. Butters, Jr. Richard and Patricia Hall John and Norma Mondelli Spardo, LLC Sandra Byrd Dorothy and Richard Hamil Paul Monical and Dimopoulos Stavros Angeline Cacchillo Patrice and Marva Duerksen Ronald and Susan Stern Jane Caira W. Richard Hamilton Patrice Moore Mimi Stormo Lori Calandro Amy Harker Enrique More D. and M. Suhre Mary K. Campbell Judith A. Harrington Terry Moreau Ruth Tarter Michael Carey Carl and Marion Harris Linda Mosqueda Patricia Tompkins Barry and Nancy Carlson Jessica and George Harris Polly and Marlin Murdoch Kelly Tutaj Maryann Carlson Mary Gail Hart Carol Rico Murphy Catherine Van Alstyne Jeffrey Caruso Robert & Loretta Henderson James M. Murray Dona M. Wagner Lawrence and Kathleen Chase Thomas Hennigan David and Elsie Napell Diane and Jeffrey Warpehoski Guy and Cynthia Chetrit Susan Hicks Iona F. Nealis Rick and Fran Willis Megan Ciccarello Michael Hough and Todd Skiles Colette Nelson Chin Wing Trudi Coakley Jeffrey and Brenda Howard Nancy Norman David and Sally Wright Elizabeth Coar Raymond A. Huml Maureen O’Brien Milton and Joanne Yatvin Steven Cohen Deborah and Robert Hunter Stephen and Les Yeamans James F. and Nancy C. Hunter Margaret O’Connor Romana Zelz Katherine Colagiovanni Gary W. Jackson Christopher Olsen Angela and Drew Zielinski Stephen Colella John Hancock Darleen and Edward Olsen Michael A. Zukowski Michael T. and Linda Collins John C. Kagan Rocco Paccione Sharon Colombo Joanne Kanakry James and Cathleen Perry Brian Colwell Rose Kanter Elizabeth Picone Jason and Sheri Conover Gifts received January 1, 2007 to December 31, 2007 FSH WATCH NEWSLETTER I ANNUAL DONOR REPORT 2007 I WINTER 2008 15 Gifts to Membership, Research and Education Scott Corey Shaun and Jack Gerblick S. Robert and Shelia Kohn Eric Narcisi Suzanne Corradini Yvonne Gillespie Elizabeth Kompel Freddie Neiditz Joseph Corregal Cynthia Gilman and Kraft Foods Ina Nelson and Cheryl Minkoff Carolyn and Frank Corso Daniel Landwer Howard and Rhoda Kraiman Barbara Nemiroff Patricia Costello Rosemarie Giovino Jerome Kraut John Nestor Margaret and Thomas Coyle Beth and Gary Glassman Kryn Krautheim Curtis Newell Vincent J. Coyle, Jr. Richard Godfrey David and Virginia Krisanda Nancy and Jeremy Noto Robert and Gayle Cranford Jody E. Goldberg-Appelman Leonard I. Krizan George and Brenda Novoson Michael Cullis Norma Golden Bryan Kromholtz Kathy O’Dea John Cuoco, III Arnold and Jane Goldstein April LaMoy Francis W. and James E. Cuoco Barbara and Saul Goldstein Roberat and Susan Lang Dorothy M. O’Keeffe Ellen Curley Louis Goldstein John and Jeanne Lavelle Jennifer O’Neill Chad Dagraca Ruth Goldstein Sue Lawson Lawrence and Robin Osman Gregory and Sabine Daly Shelia and Mel Goldstein Dr. and Mrs. Norman Lazaroff John D. Osterman Richard and Linda Davey Linda Gonzales Janghee Lee Nancy O’Toole Dorothy G. Davie Marie A. Gordinier Diane Lehman Sheri Overton Barbara and Douglas Davis Ralph and Ricki Gordon Frances Lemler William Oviatt Lawrence and B. Green Stephanie Jane Lesiak Joanne Pacheco Patricia De Felice Michael Green Hannah Levine Laurie Pacitto Gerald and Jill Dean John Gregorio Wendy and Richard Levinson Becky and Darrell Packard Rebecka Decost Sheron Groseclose Harold Lewin Antonio and Pamela Palacios Rachel Delmore Phyliss and Dennis Guralnick Todd Lewis and Ann M. Paladino Neil Dennehy Vicki Gusso Elizabeth McGowan Nancy and Stephen Paladino Mary Jo Di Nardo Janet and H. Haas Doris and William Leydon Suzannah Park Sharon Diab Martin Haisfield Ellen M. and Jeff Liethen Ronald Parker Jessica Diab Mitchell Halpern Ms. Enid Harz Linden Linda Passon Diamond & Associates, P.C. Doug Hardesty Herbert and Judith Link Tammie Payette Peggy Dickerson Nancy and Brian Harris David and Susan Lipari Geraldine and Richard Pedrini Eugene & Charlotte Dini Timothy Hart Howard and Joan Lipman Christopher Pelland Mary Doto Paula and Richard Hawley Louis R. and Carol J. Lipman Ross and Linda Pelletier Virginia D. Doyle Kiyoko Hayashi William Lockard Hilda J. Perez-Shafer Kristie Ann Draper Scott J. Heller David and Nancy Lokerson Sean Perry Jason K. Dresdow Rick Helley Jean Lokerson David and Theresa Petrelius Selma Dressler Sarajane Hersh Jane and Robert Lopp Keith Pfeifer William and Sherry Driber Page Hetzel Peter and Leslie Lundstrom Marvin and Lesley Porter Caroli Dubin Brendan Hickey James and Sonia Lynagh Margarita & Thomas Prestwich Arthur Duffy Arthur Higgins, Jr. James Mack Doris Price Michael Duran Hugh Hilton Jessie MacKinnon Prudential Ruth and John Duran L. Hirsch Jeanne Macquarrie Denise Ranger Ariel and Mariela Dybner Edna and Harold Hirshman Laura Maffei Henry and Louise Rauch Kimberly Eddy Mary Ho Carolyn and Jeffrey Maglietta Gerry Raymond Leif Ellisen Albert and Jean Marie Hodgin Sophia Mah and Carl Reinhart Denise and Henry Elwee Irene and Patrick Hoffman Benoit Schillings Brian and Kimberly Resnick Doris Embry Jessie Homish Saroja Mallik Becky Rhodes Ed Evans Pamela Hoyt Barbara Marsden Michael and Martha Richino Law Office of Patrick Faherty Beno and Freda-Lee Hubler Jack Martino Monroe Richter Hugh & Eileen Faulkner Sheryl and Rodney Humble Mita and Christopher Martino Francis Riley Elaina Feliciano Raymond G. Huml Kenneth and Karen Martis Bernadette Roberts Rosalie Ferguson Gerald Isaacson Michelle Mason Michelle Robinson Joanne Ferraro Theresa Ives Paul and Karen McCabe Jody Roesler and Frances and Leona Ferullo Joseph and Eleanor Janeliunas Priscilla L. McClay Mickey Courtney Mark J. and Michelle G. Ferullo Bertie Janssen-Lemans Elaine and Robert McCullough Mary and Daniel Rossignol Robert and Barbara Ferullo Bernie and Robin Johnson Patrick McGinley Donald Rosvold Robert and Cherrill and Dennis Johnson Linda McIntire Rick Ryel Mary Elizabeth Ferullo Deanna and James Jones Douglas McKnight Sarmistha Samantaray Kathryn Fiebich Winnie and Ken Kanter Tara McManus Simrat Sanghera and Andrew Fink Susan and Jay Kaplan Roger S. Mellen Parvinder Kohli Christine M. Fitz Patrick Kathleen G. Katz Diane Menge Jennifer Santos Edward and Holly Flores Sharon Katz Wilma Metros Paul and Maryann Scalley Beverly Florke Julie Keeling Suzanne and Ferdinand Metzger Keith Schexnayder Deanna Forgione Yoel and Phyllis Keiles Nora and Joseph Michelli Norman Schlesinger Carol Formato Katherine Koelle Hilary Michels Diane Schmidt James Foster Charlotte and Jimmy Grant Sister Helen Monroe Joseph and Darlene Schmidt Bill Franz and Cheryl Kollin James Keith and Paula Grant Lori Morgan Rosalind and Samuel Schurr Barbara Fragopoulos Kevin M. Kelley Richard Morris John Schurr Michael S. Frechette Stephen Kelley John and Judith Morrissey Carol and Susan L. Freeman Joseph and Margaret Kelly Danielle Mullin William Schwarzschild Edward R. and Lois J. Friedrich Eleanor Kennedy Mary Murphy Walter and Barbara Scott Timothy and Ella Fuhrman Michael and Diane Kimball Karen Myers Nancy Seefried Barbara Fulton Kinections LLC Maria Myers Marilyn Sefret Staci Gentry Samuel and Shirley Knopf Robert A. Nadell Naren, Roma and Leena Shah Gifts received January 1, 2007 to December 31, 2007 16 FSH WATCH NEWSLETTER I ANNUAL DONOR REPORT 2007 I WINTER 2008 Gifts to Membership, Research and Education Helen and Michael Shanks Brian and Denise Zelinski Richard A. Lefebvre Elizabeth Rose Coar Binnie Sharp Liqin Zhu Ryan Levinson Armand Corbeil Eva Shea Linda Zigler Shelia Lieberman Harry Daum Carole Sherman Frank and Susannah Zoltowski Marilyn Meisel Nancy Duca Cherri Sherman Denise and Allison Patapa Gordy Martin and BetteAnn Sherman Jessica Pease Joseph Grech Stephen Shotland In Honor Ruth Pease Thelma Green Leonard Silberberstein Meredith Pease David Haberman Keith Simes Family and friends of these on her marriage to Lady W. Hall Carol B. Simons individuals have made gifts in Mica Maddry Lady Beth Hall Ryan Skenyon their honor in 2007. Daniel Perez Irene Moses Hein Jo Smallwood Daniel and Susan Perez Tom Higgins Andrew Smith Sanford Batkin on their Anniversary John A. Holmes Jane Smith on Father’s Day Carol A. Perez Brent N. Jacobsen Lee and Debbie Spector Amy Bekier Carol A. Perez Dr. Stephen Jacobsen Herbert and Elaine Stein Douglas B. Berg on her Retirement Gordon Jacobsen Thomas and Kathy Stewart Ron and Carole Bergstein Sal Picone Phyllis Jacobsen Sarabell Stoll Barbara Birnbaum Margaret “Peggy” Powers Karen Johnsen Marti Stout Jeri Blom Irving Rappaport Marvin Kanefield Judy Su Ashley Bryan Ed Reed Jules Kanter Morty and Zeta Sudler Carolyn Burnette Valerie Renosto Josep Kanter Todd and Cathy Swanger Mr. and Mrs. Bruce Campbell Ethel Russom Ricky Leake Anthony Tamis Howard Chabner Jessica Ryley Dean Ledford John Tayloe Howard Chabner Kelly Sanderfoot Jerry Leduc Kathleen Taylor on his 50th Birthday Edward Schechter Sally Lowe Jeanne M. Teague Paul Closson Deborah Schwartz Bill Luttman Jacqueline Thurman Justin Zachery Cohen Gina, Dana, and Lora Simone Arnold Meisel Vernon Tipp Lea Cohen Monti Staton William N. Merkle Barbara and Steuart Tray The Cuoco Family Christopher and Ellen Stenmon William T. “Billy” Michael Jeanne Tropea Michele DeSha Sue and Dick Harry O. Miller Robert G. Trumble Melanie Ehrlich Coco Wing Barbara Nesnow Eleanor and Willard Turner Frank Fitzmaurice Dr. and Mrs. Glenn Wong Paul Nord James and Judith Turner The Grandson and David Younger Thomas Oxenreider Nancy Vacca Granddaughter of Mr. and Helen Younger Godfrey Padberg Carol van de Rijn Mrs. Kenneth Fuhrman Honoring Our Troops Catherine Pankraz Debra Vance David Fulmer Kindergarten ABC Quilt Project Elmer “John” Pickles Sandra Vandort Sixto Garcia Klara Pogany Dorothy and George Verbel Catherine Gibson Mildred Rabinowitz Claire Villeneuve Erin Gullage In Memory Irving Rappaport Wainwright Law Office Howard Haberman Doris Raskin Gertrude M. Wambach Bill Herzberg Family and friends of these Shirley Renders Tom and Martha Watson Harry Herzberg individuals have made gifts in Angelina D. Richino Ethel Webb Judith Marantz Herzberg their memory in 2007. Herrman Rotter Beverly Weyenberg on Mother’s Day Sillman “Bud” Sawyer James G. White and her Birthday Richard Manning Allan Elizabeth “Betty Smith Stephen Whiting and The Herzberg Family Lisa Anderson Jean E. Soldan Judy Grob-Whiting Rob Holmes Seneth Baltes Mary Spaits Walter Whitmore Meredith Huml Mother of Susan Baron Henry Spritzer Dianne Wolpert Lauren Jacobs Ruth Batkin John L. Stephenson Debbie and Jeff Woods Preston C. Jeffares Ruth Berkowitz Margaret Marie Taillie Christiane Wyckoff Beth and Jeff Johnston Jean Bond Janine Thys Janette Wyman-Babikian Dr. and Mrs. Frank Katz Kevin Brance Winnifred Tiley Tim Yee The Katz Family Ron Brennan Irene Tolin Paul and Phyllis Young The Kelly Family Harriet Brodskey James W. Weyenberg John and Deborah Zale William Klipper Roger Brown R. Zeamer Aubrie Lee Meribeth Nachtigal Claassen

Gifts received January 1, 2007 to December 31, 2007. We deeply regret any errors or omissions. Are You a Member of the FSH Society?

he FSH Society is a world leader in combating muscular dystrophy. It has provided $2 million in seed grants to pioneer- Ting research worldwide and it has created an international collaborative network of patients and researchers. If you are not already a member, won’t you join in this effort? Please return your membership gift in the envelope enclosed inside this issue of Watch. Thank you!"

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