The Gathered View National Newsletter of the Prader-Willi Syndrome Association (USA) Hand-to-Hand Across America ~By Jodi O’Sullivan Development/Communications

Last year we kicked off our inaugural year of Prader- there are more who participate. We move closer to reaching Willi Syndrome On The MoveSM with 14 events occurring our campaign goals to raise awareness, grow support, raise nationally. This second year our goal is to double that funds, improve health, inspire, and remind (go to www. number. Ideally, soon we’ll see On The Move SM events in pwsausa.org/onthemove to see those goals in more detail). every state, with “Mo”, the move character, a more easily Anyone who participated in the campaign’s first year will recognized symbol for PWS. tell you they are glad they did it for a number of reasons. The The benefits of a cohesive campaign include most important reason is that it is entirely for the benefit increased visibility and solidarity, and more of those who live with the syndrome. It is for funding. Those involved with the PWSA their future. It is for their lives. (USA) organization have had a vision On The MoveSM was created of raising public consciousness about thoughtfully to require movement-based PWS through an organized nationwide activity which is important for those effort for many years. With the help of who have PWS, and to occur in May, dedicated volunteers, it’s been taken which is PWS Awareness Month. from idea to reality, and it’s being The full list of states where events are offered to you. officially registered is: CA, CT, FL, I remember when I was a kid, I MA, NY, OH, WI (as of print date); visited my family in Ohio. My aunt we’ll be announcing more soon. announced that we were going to The seeds are planted and now need participate in Hands Across America. If tending. In this case, the degree to which you’re not familiar, Hands Across America, we all nurture and toil by planning an according to Wikipedia.org, was a benefit On The MoveSM event or supporting one event and publicity campaign staged on Sunday, May 25, already scheduled is what will ultimately determine what 1986, in which approximately 6.5 million people held hands will grow in the garden to come. Let’s work for a wondrous in a human chain for fifteen minutes along a path across Eden, by working hand-to-hand across America together, and the continental United States. Many participants donated take this even further from idea to reality. ten dollars to reserve their place in line; the proceeds were To join our movement or for more information, visit donated to local charities to fight hunger and homelessness www.pwsausa.org/onthemove or call PWSA (USA) at and help those in poverty. Hands Across America raised $34 800.926.4797. ■ million. The idea was conceived by one man who took it from idea to reality. That reality was something in which I partook. I remembered feeling like part of something really big, In this Issue something that mattered. On The MoveSM is like that—being Men and Grief...... 10 part of something big to accomplish more than what one Barb McManus Retires...... 11 person could do alone. Chapter and individual involvement Surviving College with PWS...... 12 is vital. Our chain is stronger and covers more distance when State Leaders at Conference...... 14

Volume 37, Number 2 ~ March-April 2012 ~ Our 37th Year of Publication The Gathered View ~ Prader-Willi Syndrome Association (USA) March-April 2012 1 Medical and Research View Presentations at the 25th Annual PWSA (USA) Scientific Meeting in Orlando, Florida – Nov 2011 The 2011 Scientific Co-Chairs Keynote speakers: Maïthé Tauber, M.D., Ph.D., Toulouse, France spoke on “The French Reference Centre for PWS and Pertinent Endocrine Issues in PWS” Cary R. Savage, Ph.D., Kansas University Medical Center spoke on “Functional MRI studies in PWS and Obesity” Here are more of the abstracts presented at Scientific Day at the national conference. In the issue isThe Behavior/ Neuropsychiatry Review and The Medical/Nutrition Review. The complete abstract booklet can be bought by calling the PWSA (USA) office at 800-926-4797 or emailing Cindy Beles [email protected] . The cost is $10 for members and $15 for non-members. ~ Janalee Heinemann The Behavior/Neuropsychiatry Review ASD (autism spectrum disorders) Prosocial kg/m2. The mean amount of time since Social Functioning in Prader-Willi behaviors such as generosity, empathy, and admission into the approved facility was Syndrome helpfulness were more evident in those with 6.3±5 years. With the exception of only one Anastasia Dimitropoulos DEL (deletion) subtype than in individuals participant, all those included in the study Department of Psychological Sciences, Case with m-UPD or ASD. sample experienced weight loss and a decrease Western Reserve University, Cleveland, Ohio This research was funded by a grant from in BMI. The mean amount of weight loss Introduction/Background: In addition the PWSA (USA) by study participants was 22kg. The greatest amount of weight loss was 65kg, however; one to a well-described behavioral phenotype that Psychiatric Symptoms in Prader-Willi includes hyperphagia, obsessive-compulsive individual was noted to have a 7 kg weight Syndrome gain since admission. In addition to weight symptoms, disruptive behavior, and cognitive Elizabeth Roof, Carolyn Shivers, Lauren delays, research also suggests that some loss, across all those study participants who Deisenroth and Elisabeth Dykens lost weight (7 of 8) BMI was noted to decrease persons with Prader-Willi syndrome (PWS) Vanderbilt Kennedy Center, PMB 40, 230 have repetitive behavior and social deficits by 42%, resulting in a mean BMI of 26.4 kg/ Appleton Place, Nashville, TN 2 reminiscent of autism spectrum disorders m (compared to the mean pre-admission Results: Those with the mUPD subtype BMI of 39±14 kg/m2 prior to residing in the (ASD). Although repetitive behavior has been versus Deletion subtype of PWS showed a well characterized in this population, social food secure environment). significant increase of psychotic symptoms Conclusion: Among those females with functioning has not been well studied thus with delusions, magical thinking and other far. The few findings that have been reported PWS included in the study, the introduction perceptual disturbances being the most of a supervised, food secure environment for indicate that social problems are common in commonly endorsed features. In addition, PWS with individuals with PWS exhibiting people with PWS results in overall weight loss age is positively correlated with brief reactive and improvement in BMI. more problems with social competence and psychosis. Parental Role in Physical Activity making fewer gains in competence with Those with Imprinting Mutation among Children with Prader-Willi age compared to individuals with other subtype of PWS are also scoring significantly neurodevelopmental disorders (Rosner et higher on the psychotic subtype, suggesting Syndrome al., 2004). Further examination of social they may share some common psychiatric Jie Weiss, Michele Mouttapa and Daniela functioning in PWS is also warranted in light features with those who have the UPD Rubin of findings implicating the 15q11-q13 region subtype. California State University, Fullerton as a genetic susceptibility region for idiopathic Introduction/Background: It has The Effect of Residential Placement autism. In addition, research to date indicates been demonstrated that parents play a role individuals with the maternal uniparental on Weight Control of Individuals with in influencing their children’s health-related disomy (m-UPD) subtype of PWS are at Prader-Willi Syndrome: An Outcome behaviors. Physical activity is vital to the greater risk for autistic symptomatology Evaluation management of Prader-Willi Syndrome 1 2 than those with paternal deletions (DEL) L. Spanbauer and K. Stote (PWS). One of the determinants of youth 1 of 15q11-q13. The purpose of this research Consultant for Catholic Charities Disabilities physical activity (PA) is the parents’ own is to examine social competence and Services, Albany, NY, Adjunct Instructor, State PA. Cognitively, parents’ views of the responsiveness in individuals with PWS in University of New York, Empire State College, consequences of PA among children predict direct comparison to individuals with ASD Center for Distance Learning, Saratoga Springs, the child’s PA level. This study examined 2 and to examine those abilities with respect to NY; Assistant Professor State University of New associations between parents’ self-reported PWS genetic subtypes. York, Empire State College, Center for Distance physical activity (PA) and PA of their Their findings indicate individuals Learning, Saratoga Springs, NY children with PWS. This study also explored with PWS have difficulty initiating social Results: Study participants (N=8) had relationships between parents’ perceived interaction and may be prone to social a mean age of 30 years (range: 38 to 18) and consequences of their child’s PA, and child’s hesitancy or withdrawal similar to those with an average pre-admission BMI of 39±14 actual PA involvement, using the Multi-

2 March-April 2012 The Gathered View ~ Prader-Willi Syndrome Association (USA) Medical and Research View

Attribute Utility (MAU) decision making Preliminary Results of Strengths and metabolic responses to exercise between youth model as the theoretical framework. Weaknesses in Neuropsychological with PWS and those without, accounting for Conclusion: The observed positive Testing in Children with Prader-Willi differences in adiposity. influence of parental PA on children’s PA Syndrome Discussion: Despite baseline differences suggests that one potentially effective strategy Marnie Hutchison1, Wing Sze Wence in IGF-1 and testosterone, youth with PWS to increase PA among children with PWS Leung1, Michelle L. Mackenzie2, Andrea respond similarly to acute exercise compared may be through promotion of PA among M. Haqq2 and Jacqueline Pei1 to youth without PWS for several hormones parents. Because children with PWS are more 1Department of Educational Psychology, (insulin, glucagon, IGF-1, cortisol, and dependent on their parents compared to University of Alberta, Edmonton, AB, Canada; testosterone). Metabolically, PWS present children without PWS, they may especially 2Department of Pediatrics, University of Alberta lower glucose concentrations than NW benefit from parental support for a healthy Results/Conclusions: The study sample (normal weight) and OB (obese); however, lifestyle. demonstrated an uneven profile suggesting glucose concentrations do not seem to limit The Relationship between Early- certain areas of strength and weakness and the rate of glycolysis during exercise as Onset Obesity and Behavior that children’s IQ does not wholly account for indicated by similar lactate responses. Youth Krista S. Garner1,2, Jennifer L. Miller2, performance on these measures. On average, with PWS present similar rate of lipolysis as Jonathan J. Shuster3, John H. Kranzler1 children with PWS obtained abbreviated NW and OB in response to acute exercise. and Daniel J. Driscoll2,4 intelligence scores in the extremely low Thus, it appears that in childhood and 1Department of Special Education, School range. Participants’ verbal and nonverbal adolescence, PWS does not drastically affect Psychology, and Early Childhood, College of working memory scores are comparable to some hormonal and metabolic responses to Education; 2Department of Pediatrics, College of their IQ. Results from the TOVA indicate acute endurance exercise. Medicine; 3Department of Health Outcomes and that these children demonstrate significant Postprandial Cardiac Autonomic Policy, College of Medicine; Center for Epigenetics, difficulty maintaining attention for sustained Function is Impaired in Prader-Willi 4University of Florida, Gainesville, FL periods of time and show signs of fatigue Syndrome Results/Discussion: The results of the and impulsivity. On the NEPSY-II, children Louise Purtell1, Lisa Sze2, Arthur present study indicate that (according to with PWS demonstrated relative strengths Jenkins3, Alexander Viardot1, Herbert parent, teacher, and self-report) individuals on Animal Sort and Response Set but Herzog4, Amanda Sainsbury-Salis4, Ellie with early-onset morbid obesity (EMO) showed relative and normative weaknesses Smith5, Georgina Loughnan6, Katharine and individuals with PWS tend to behave on Auditory Attention and Inhibition. Steinbeck6,7 and Lesley V. Campbell1,8 On the BRIEF, parents reported children similarly, on average, and their behavior 1Diabetes & Obesity Research Program, Garvan with PWS to have relative strengths with tends to be more problematic than typically Institute of Medical Research, 384 Victoria organizing materials, initiating tasks, and developing individuals. For example, Street, Sydney-Darlinghurst NSW 2010, holding information in memory. Parents both the individuals with EMO and the Australia; 2Clinics for Endocrinology, Diabetes reported normative and relative weaknesses individuals with PWS scored significantly and Clinical Nutrition, University Hospital controlling their emotions, changing tasks, worse than their typically developing sibling Zurich, Zurich, Switzerland; 3School of Health resisting impulses, regulating their behaviour, controls across raters on the Atypicality, Sciences, University of Wollongong, NSW 2500, and self-awareness. Although a small sample Withdrawal, Somatization, Adaptability, Australia; 4Neuroscience Research Program, size limits our ability to generalize results and Social Skills, and Leadership scales. Garvan Institute of Medical Research, 384 make detailed conclusions, this preliminary These findings suggest that individuals Victoria Street, Sydney-Darlinghurst NSW information can begin to inform practice. with EMO and individuals with PWS tend to 2010, Australia; 5Department of Cytogenetics, As such, we will also discuss implications for display more strange or odd behaviors, tend to The Children’s Hospital, Westmead Clinical intervention and support based on this early be more withdrawn, pessimistic, or sad, tend School, Westmead NSW 2145, Australia; information. to display more health-related concerns, tend 6Prader-Willi Syndrome Clinic, Department to be less adaptable to changing conditions, The Medical/Nutrition/Endocrine Review for Metabolism and Obesity, Royal Prince tend to have more difficulty complimenting Hormonal and Metabolic Responses Alfred Hospital, Sydney-Camperdown NSW others and making suggestions for to Endurance Exercise in Prader-Willi 2050, Australia; 7Academic Department of improvement in a tactful and socially Syndrome Adolescent Medicine, University of Sydney, acceptable manner, and tend to have more 8 Daniela A. Rubin1, Daniel A. Judelson1, Sydney, NSW 2006, Australia; Department difficulty making decisions, being creative, Susan S. Clark2, Diobel M. Castner, Joane of Endocrinology, St Vincent’s Hospital, 390 and getting others to work together effectively Less2, and Jason Ng1 Victoria Street, Sydney-Darlinghurst NSW than typically developing individuals. 1Department of Kinesiology, California 2010, Australia. Surprisingly, not only did the individuals State University, Fullerton; 2Department of Introduction: Prader-Willi syndrome with EMO typically score more similarly on Endocrinology, Children’s Hospital of Orange (PWS) is a leading genetic cause of the BASC-2 to the individuals with PWS County obesity, characterised by hyperphagia and than to their normal weight sibling controls Introduction: Prader-Willi syndrome endocrine and behavioural complications. across raters, but they also often scored (PWS) is characterized by several hormonal The syndrome is associated with increased significantly worse than the individuals with and metabolic abnormalities resulting in cardiovascular morbidity and early mortality. PWS. The reasons behind these findings need excessive body fat. The purpose of this study Autonomic tone, measurable by analysis to be explored further. was to determine differences in endocrine and continued on page 4

The Gathered View ~ Prader-Willi Syndrome Association (USA) March-April 2012 3 Medical and Research View

Presentations, continued from page 3 poor judgment and cognitive inflexibility. Freemark5, Michelle L. Mackenzie1 and Aging individuals with PWS are at greater Andrea M. Haqq1 of heart rate variability, has been shown to risk for malignant hypothermia. Physicians, 1Department of Pediatrics, University of be a cardiovascular risk predictor, and is families and residential providers must learn Alberta, Edmonton, AB, Canada; 2Faculty of closely associated with adiposity. It has been about the risks of hypothermia in PWS. Physical Education and Recreation, University suggested that an impairment in autonomic Recommendations include greater supervision of Alberta; 3Department of Medicine, nervous system (ANS) responsiveness could and behavioral reinforcement for wearing University of Alberta, Edmonton, AB, Canada; be a cause of cardiovascular morbidity appropriate clothing, early detection by 4Department of Pediatrics, University of in PWS. However, no differences have monitoring vital signs in cold weather, and Amsterdam, The Netherlands; 5Department of been found between people with PWS ongoing monitoring of body temperature Pediatrics, Duke University, Durham, NC, and BMI-matched controls during in those who have already experienced an USA orthostatic manoeuvres. Postprandial ANS episode of malignant hypothermia. Background: A number of clinical responsiveness in PWS has not yet, to our features in PWS suggest congenital ANS knowledge, been studied. Further, due to Cases of Survival and Death from dysfunction, including: viscous saliva, altered the relationship between autonomic tone Gastric Dysmotility in PWS gastrointestinal motility and temperature and adiposity, it is desirable to eliminate Linda M. Gourash and Janice Forster control, hypoglycemia, sleep disturbances, fat distribution as a confounding factor by Pittsburgh Partnership, Pittsburgh, PA increased pain threshold and a specific matching groups for total and abdominal Introduction/Background: Abnormalities neurocognitive profile. Moreover, common adiposity. This study assesses basal and of smooth muscle are clinically significant in causes of mortality in PWS differ from postprandial ANS responsiveness in PWS many persons with PWS. Gastric necrosis, traditional obesity-related causes and may independent of adiposity rupture and death are described in the be linked to ANS dysfunction that is unique Conclusion: There was a postprandial literature beginning in 1997 but other from the ANS dysfunction associated with defect in ANS responsiveness in adults important clinical details are still emerging. general obesity. with PWS. While this impairment had Additional descriptions of cases of persons Conclusion: These preliminary findings no apparent effect on heart rate, a robust who survive gastric dilation are needed in suggest possible important differences in and important predictor of cardiovascular order for clinicians to respond correctly and autonomic cardioregulatory mechanisms morbidity, the meal-related abnormality to guide our surgical colleagues. between normal control subjects and the we found may contribute to some appetite Conclusion: All persons with PWS children with PWS. Additional subjects are regulation impairments in PWS. hospitalized for any reason should be needed for study of ANS dysfunction in Phenomenology of Malignant weighed daily and require 1 to 1 supervision at all times both to guarantee no extra PWS. The confirmation of ANS dysfunction Hypothermia in PWS in PWS could lead to novel treatment 1 2 food acquisition and to mediate between Janice Forster , Francie McDougall , strategies to improve quality of life and 2 healthcare providers and the patient. Jacqueline Durette and Linda M. prevent premature mortality. Gourash1 Inappropriate communications with adults with PWS include discussions of uncertain Growth Hormone Effects in Adults 1Pittsburgh Partnership, Pittsburgh PA; medical possibilities, ambiguous test results with Prader-Willi Syndrome 2Latham Centers, Brewster MA and offhand comments or discussions about Merlin G. Butler1, Bryan Smith2, Jaehoon Background: Persons with PWS have food or diet which introduce additional Lee3, Candy Schmoll4, Wayne Moore4 and difficulty maintaining core body temperature uncertainty, stress and behavioral problems. Josephe E. Donnelly2 when ambient temperature changes. In Communications should be done privately 1Departments of Psychiatry & Behavioral addition to faulty homeostatic mechanisms with guardians or caretakers who should Sciences and Pediatrics, University of Kansas in the hypothalamus, there is reduced then interpret to the patient. Prevention for Medical Center, Kansas City; 2Center for transmission of temperature sensation from susceptible individuals appears to include Physical Activity & Weight Management the skin; impaired judgment that interferes careful monitoring of intake and daily bowel and 3Center for Research Methods and Data with selection of appropriate clothing to patterns and ongoing daily management Analysis, University of Kansas, Lawrence; match the weather; and cognitive inflexibility of constipation. Other factors, no doubt, 4Department of Pediatrics, Children’s Mercy that interferes with compliance for seasonal exist. Continued sharing of crucial clinical Hospital, Kansas City, Missouri changes in clothing. A few individuals details in these cases will guide other Conclusions: The beneficial effects of have had episodes of sustained (malignant) clinicians when they are involved in what growth hormone treatment noted in treating hypothermia <92oF, severe enough to be life is often their first experience with this life children with PWS were identified in our threatening, and these individuals appear threatening condition. More detailed but adults during the 12 months growth hormone to be susceptible to experiencing subsequent concise information about PWS and gastric treatment interval but body composition episodes. dysmotility for the surgical community is and physical activity measures and both Conclusions: Malignant hypothermia needed. HDL and IGF-1 levels regressed to baseline is a life threatening problem seen in PWS. after treatment cessation for 12 months. The Investigation of an underlying medical cause Autonomic Nervous System (ANS) growth hormone treatment had no apparent is essential considering iatrogenic etiologies. Dysfunction in PWS and Childhood effect on energy expenditure. All individuals with PWS are at risk for mild Obesity: Preliminary Findings hypothermia because of impaired peripheral Lawrence P. Richer1, Darren S. DeLorey2, Serum IGF-1 Levels Do Not Correlate somatosensory and central thermoregulation, Arya M. Sharma3, Felix Kreier4, Michael with Growth Hormone Dose in 4 March-April 2012 The Gathered View ~ Prader-Willi Syndrome Association (USA) Medical and Research View Your Association Children with Prader-Willi Syndrome of Pediatrics, University of California, San needs YOUR support Diane E. J. Stafford Francisco Children’s Hospital, Boston, Harvard Medical Discussion/Conclusion: These cases and participation School, Boston, MA represent the 3rd and 4th reported females in this campaign. Conclusion: Growth hormone with PWS who brought a pregnancy to term. therapy has been shown to benefit children All were on behavioral medications (SSRIs with Prader-Willi syndrome in a variety or antipsychotics) at the time they became of aspects. Appropriate dosing of growth pregnant, possibly stimulating their FSH and hormone for these children, however, has LH response and increasing the likelihood remained difficult to determine and clinical of ovulating and establishing a pregnancy. practice is variable. Based on this review Three of the four with fertility had significant of 67 patients with Prader-Willi syndrome, weight loss prior to pregnancy; the other was serum IGF-1 levels in those treated with never obese. Thus it appears that infertility growth hormone are highly variable whether is not a consistent feature in females with dosing is based on body weight or body PWS and that there is a variable degree of surface area. This data supports the need reduced fertility in untreated females with to individualize growth hormone dosing PWS of any molecular genetic etiology. based on measurement of IGF-1 levels. Serial Though hypogonadism is an important measurements are necessary in individuals diagnostic feature, it should not preclude the when growth hormone doses are altered possibility of pregnancy without testing, and as there is frequently no linear correlation sex education and discussion of contraception between dose and IGF-1 level, even in the should be part of management of women same patient. Clinicians who prescribe with PWS. growth hormone therapy for PWS should Effects of Early Growth Hormone adjust growth hormone dose based on serum Therapy in Individuals with Prader- IGF-1 in addition to longitudinal growth rate Willi Syndrome and body weight. Carolina Vac1, Jennifer Miller2, Jonathan Hyperghrelinemia Begins Early in Shuster3 and Daniel J. Driscoll1,4 Prader-Willi Syndrome 1College of Medicine University of Florida; Frederick A. Kweh, Jennifer L. Miller, 2Department of Pediatrics, University of Carlos R. Sulsona and Daniel J. Driscoll Florida; 3Department of Biostatistics, University College of Medicine and Department of of Florida; 4Center for Epigenetics, University Pediatrics, University of Florida, Gainesville of Florida Discussion: Serum ghrelin levels were Results and Conclusions: Those who measured in individuals with PWS from 2 began GH therapy before 1 year of age had months to 36 years of age. We found that a BMI Z-score that was significantly lower ghrelin levels were significantly elevated than those who started GH later in life. beginning in early infancy in PWS well Additionally, those who began treatment before the onset of obesity and hyperphagia. before 1 year of age had a lower total Given that ghrelin levels were the highest percentage of body fat at the time of analysis in PWS in infants still in the poor appetite and a higher resting energy expenditure phase (i.e., 1a) it seems unlikely that elevated than those who began GH at an older age. ghrelin levels are causing the switch to the Consistent with previous analysis of effects of hyperphagic phases of PWS. However, it early GH treatment, those who were treated Thank you. has been shown in mice that ghrelin can also prior to age 1 had higher verbal skills than act to increase fat mass independent of its those treated later. effect on appetite (Perez-Tilve et. al, FASEB However, GH treatment prior to age J. 25:2814, 2011). Therefore, it is likely that 1 did not have a significant effect on GIA, the elevated ghrelin levels are causing the TIA, working memory, cognitive efficiency, Production, printing, and increased fat mass seen in infants with PWS or BSI. Although there was a trend towards mailing of this newsletter compared to normal infants with similar higher GIA with early GH treatment, this was underwritten by a body mass indices (BMI) association was not significant on ANCOVA generous grant from Two More Children Born to Women analysis. Further data will be forthcoming Eastside High School with Prader-Willi Syndrome, One on the entire cohort followed under the student-sponsored Normal, One with Angelman auspices of the NIH-funded Rare Disease Suzanne B. Cassidy and Divya Vats Consortium. ■ “Spirit Week” Fundraiser in Division of Medical Genetics, Department Greenville, South Carolina.

The Gathered View ~ Prader-Willi Syndrome Association (USA) March-April 2012 5 Medical and Research View 2nd International Conference on HYPERPHAGIA The Mechanism – The Research – The Treatment and 26th Annual PWSA (USA) Scientific Day Conference and PWSA (USA) Professional Providers Conference October 17-20, 2012 Pennington Biomedical Research Center - Louisiana State University Baton Rouge, LA, USA

Hyperphagia Conference common known genetic cause of life-threatening obesity, Prader-Willi syndrome features extreme problems related to Wednesday, Oct. 17, 6:30 p.m. – 9:30 p.m. genetics, hormones, brain structures, psychology and appetite Thursday, Oct. 18, 8:30 a.m. – 9:15 p.m. control. Research on the extremes of PWS is the “Window Friday, Oct. 19, 8:30 a.m. – 1:00 p.m. of Opportunity” for breakthroughs applicable to the general population. PWSA (USA) Professional Providers Conference For information on submitting an abstract for a poster Thursday, Oct. 18, 8:30 a.m. – 5:30 p.m. go to www.pwsausa.org -- Deadline July 1st Friday, Oct. 19, 8:30 a.m. – 12:00 p.m. PWSA (USA) PROFESSIONAL PROVIDERS 26th Annual PWSA (USA) Scientific Day Conference CONFERENCE Friday, October 19, 1:00 p.m. – 8:00 p.m. This conference is designed for all who work in homes, residential facilities, vocational programs, educational Saturday, October 20, 8:30 a.m. – 12:00 p.m. programs, health and human service agencies, and other community programs that provide assistance and education to HYPERPHAGIA CONFERENCE persons who have Prader-Willi syndrome and their families. ■ Join top international scientists in the field of appetite Consider attending the PWSA (USA) Scientific research for a thought-provoking program designed to: Conference immediately following. ■ Expand your understanding of hyperphagia ■ Generate points of contact and collaboration 26TH ANNUAL PWSA (USA) SCIENTIFIC DAY ■ Create research initiatives for hyperphagia CONFERENCE ■ The conference will feature top international scientists These sessions are designed for physicians and researchers in the field of appetite and obesity research. Over the in the field of Prader-Willi syndrome. Presentations will be made by world-renowned scientists, medical specialists and three-day conference, participants will present the latest other professionals. information on various aspects of appetite control We are pleased to announce that Professor I. Sadaf including: Farooqi (University of Cambridge, United Kingdom) and ■ Intracellular nutrient control of hunger Professor George A. Bray (Pennington Biomedical Research ■ Common and novel genetic causes of hyperphagia Center, Baton Rouge, Louisiana), both internationally known ■ Animal and cell models of hyperphagia experts, have accepted our invitation as keynote speakers ■ Addictive behavior and hyperphagia at the Scientific Day Conference. Professor Farooqi will be ■ Novel investigative approaches to study hyperphagia speaking on the genetics of obesity while Professor Bray We’re hungry for a solution to obesity. Imagine that one will discuss causation of obesity, weight gain and energy source could provide breakthrough insight with Prader-Willi expenditure. For Information about the Scientific Conference syndrome as that “Window of Opportunity”. As the most including requests for abstracts go to www.pwsausa.org.

6 March-April 2012 The Gathered View ~ Prader-Willi Syndrome Association (USA) Hyperphagia Conference Agenda Wednesday, October 17 “Developing Drugs for Genetic and Hypothalamic Obesity 6:30 p.m. – 9:30 p.m. with Hyperphagia: Role of Regulatory Authorities” - To be determined Introduction to Meeting Steven Heymsfield, M.D. Animal and Cell Models of Hyperphagia “How can Animal Models for Prader-Willi Syndrome help us Dinner and Keynote Presentations find Treatments for Hyperphagia?” “Hypothalamic, Brainstem and Intracellular Nutrient Signals Rachel Wevrick, Ph.D. Controlling Food Intake” Randy Seeley, Ph.D. “Hyperphagia in Animal Models of Bardet-Biedl Syndrome” “Defining Hyperphagia” Val Sheffield, M.D., Ph.D. Jack A. Yanovski, M.D., Ph.D. Poster Session, Social Hour and Dinner with Presentation Thursday, October 18 “Addictive Behavior and Hyperphagia” Nicole M. Avena, Ph.D. 8:30 a.m. – 9:15 p.m. Welcome and Conference Overview Friday, October 19 Phillip Brantley, Ph.D. 8:30 a.m. – 1:00 p.m. Causes of Hyperphagia Novel Techniques for Investigating Obesity “Prader-Willi Syndrome - The Window of Opportunity” “Novel Genetic and Neuroanatomical Techniques to Dissect Daniel J. Driscoll, M.D., Ph.D. Feeding Pathways in Animal Models” Joel Elmquist, D.V.M., Ph.D. “Common Genetic Variants Causing Hyperphagia and Obesity” “Using Induced Pluripotent Stem Cells to Investigate Ruth Loos, Ph.D. Neuronal Phenotypes in Genetic Obesity” Rudy Leibel, M.D. “Novel Genetic Defects Causing Hyperphagia” I. Sadaf Farooqi, M.D., Ph.D. Research Challenges “Panel Facilitated Discussion of Research Challenge Questions “Craniopharyngioma and Hyperphagia” and Research Agenda” Christian L. Roth, M.D. George Bray, M.D., Tony Goldstone, M.D., Ph.D. “SIM1 Gene and Hyperphagia” Lunch and Learn – Guided Tour of Pennington Andrew Zinn, M.D., Ph.D. Biomedical Research Center with Lunch Developing Treatments - Pros and Cons Panel Facilitated Discussions Hyperphagia Organizing Sponsors Drugs vs. Behavior Prader-Willi Syndrome Association (USA) “Best Practice for Treating Hyperphagia will involve Drugs Pennington Biomedical Research Center (PBRC) in addition to Control of the Food Environment and Foundation for Prader-Willi Research (FPWR) Behavioral Modification” Tony Goldstone, M.D., Ph.D., George Bray, M.D., Scientific & Providers Organizing Sponsors Linda Gourash, M.D. Prader-Willi Syndrome Association (USA) Bariatric Surgery Pennington Biomedical Research Center (PBRC) Pros and Cons: “Bariatric Surgery is an Appropriate Treatment Option for Patients with Genetic or Hypothalamic Note: Parent observers are welcome to attend Obesity” the Scientific and Hyperphagia Conferences Tony Goldstone, M.D., Ph.D., Christian Vaisse, M.D., Ph.D., Ann Schiemann, M.D., M.B.A. For More Information Contact: Developing Treatments - Pharmaceutical Interventions James G. Kane, M.B.A. “How to Run a Clinical Trial for Genetic and Hypothalamic t: 1-410-321-9788 Obesity with Hyperphagia” e: [email protected] Maïthé Tauber, M.D., Ph.D. www.hyperphagia.org www.pwsausa.org

The Gathered View ~ Prader-Willi Syndrome Association (USA) March-April 2012 7 Medical and Research View Do you know of a child who does not test out Low Sodium in PWS Q: Can Psychotropic Medications Cause as PWS but is very obese Low Sodium? and/or has the PWS-like I had two calls from parents whose adult children who have Prader-Willi syndrome appetite? experienced a very low drop in sodium. Both were on more than one psychotropic medication Early-onset Morbid Obesity (EMO) Recruitment – primarily Prozac, Seroquel and Trileptal. I went through the PWS-EMO Rare Disease Natural History to our experts (all members of our PWSA (USA) Study funded by NICHD as part of the RDCRN Clinical Advisory Board), and the following was Background: Many children who become obese before their responses ~ Janalee the age of 4 are referred to either genetics or endocrinology Dr. Greg Cherpes, The Children’s Institute to evaluate for possible identifiable etiologies of their obesity. -- Hyponatremia (low sodium) is a potential Very little is known about the etiology of early childhood complication of fluoxetine (Prozac) and other obesity. A few genes have been described which can cause SSRI use, and I have definitely seen it before early childhood obesity, but the vast majority of patients are (though not often). There may be an increasing undiagnosed at this point. risk with advancing age. Rationale: The diagnosis of PWS is often entertained Dr. Jan Forster, Pittsburgh Partnership in children who develop obesity early in life. We refer to -- The Prozac and/or Seroquel can cause individuals who develop obesity before the age of 4 as the hyponatremia alone and with greater incidence in Early-onset Morbid Obesity (EMO) population. Many combination. All of the SSRI’s and the atypical of the EMO children have similarities to PWS, including antipsychotic medications can do this. developmental delay, learning problems, and behavioral Dr. Linda Gourash, Pittsburgh Partnership problems. However, several of the EMO children also have -- Every single person I put on oxcarbazepine distinct differences from PWS, including tall stature, a large (Trileptal) developed low sodium when the dose head circumference, lack of hypotonia, and lack of neonatal exceeded about 900-1200 mg. per day. I am failure-to-thrive. certain that the problem with this young man is Specific Aim: To determine the natural history of Early- the oxcarbazepine, and they should drop his dose onset Morbid Obesity (EMO)/”Prader-Willi Like” patients to 1200 mg. and recheck his sodium. The effect is with respect to birth history, medical problems, age of onset dose-related but not linear. I had this experience of obesity, appetite, learning difficulties, psychiatric/behavioral with about 12 patients. Otherwise it’s a great problems and physical features. drug, but I do not trust people to use it carefully Inclusion/Exclusion criteria: TheEMO group will be enough. Sometimes the sodium is low but not selected solely based on a documented medical chart history dangerously low; you have to keep checking it. of their weight having exceeded 150% of Ideal Body Weight It can drift down slowly over weeks or months. (IBW) or a Body Mass Index (BMI) of greater than 97% We learned this the hard way. Even though I before 4 years of age. Participants will be excluded from this warned the outside physicians about the problem, part of the study if they have a chromosomal aneuploidy two patients were allowed to drop so low they (i.e., an extra or missing whole chromosome) or Fragile X as had seizures (which generally occur when the the cause of their obesity. All EMO patients will have had a sodium is below 130, depending on how quickly chromosomal (or a chromosomal microarray) analysis, DNA it drops) We also had two patients (one had an methylation testing for PWS, MC4R mutation analysis and a atypical deletion) develop low platelets. One was serum leptin prior to entry to the study. dangerously low and recovered as soon as we Study Recruitment: Information about the participating stopped the Trileptal. ■ research centers can be found at the following link: http:// rarediseasesnetwork.epi.usf.edu/arpwsc/studies/pw-5202.htm Note: PWSA (USA) is a collaborative member in this Rare Diseases Clinical Research Network (RDCRN) ■

8 March-April 2012 The Gathered View ~ Prader-Willi Syndrome Association (USA) Interim Executive Director’s View

If you are reading this In the past year PWSA Investing – newsletter, probably someone (USA)’s Family Support staff you know was born with Prader- spoke with families, doctors, in Lives Willi syndrome. PWSA (USA)’s school officials and others on By David Crump Board Chair, John Heybach, more than 2,000 occasions, Interim Executive Director is fond of saying: “The PWS providing information and When I was a child, my parents community is an exclusive club David Crump support, helping manage taught me to set aside money to put that no one wants to be a member of … crises, and helping find solutions to in a savings account. Even from my but it’s our family now.” Because of this challenges. We were contacted by 125 weekly allowance I was to take a certain connection it is important to you that families who had just received the amount and invest it in savings. This this community and particularly the diagnosis that their child has PWS. early training served me well, helping person and family you are connected We offered them encouragement; me form a lifelong habit of building with have the resources and support assured them that we are here for any that proverbial “nest egg” for a specific they need. And it is important to you questions or support needs they have; need or for the future. that research is being done to find sent them the Package of Hope full The idea of investing is to create appropriate treatments and ultimately a of resources and information; and for or achieve something that is of value cure for PWS. those who wanted it, assigned new to you. Putting money into a savings The Prader-Willi Syndrome parent mentors. We have also responded account – or currently, some other more Association (USA) at the national level to numerous inquiries from families lucrative investment tool – is intended and through its state Chapters is here in other countries, seeking help and to put your money to work making for this purpose. The kind of value information. We funded research, in more money. Yet the real goal is not PWSA (USA) offers is illustrated, in partnership with the Foundation for the money itself but something else of part, by the following case. Names have Prader-Willi Research as well as through value that your money can get for you: been changed to ensure anonymity. PWSA (USA)’s Best Idea Grants a particular product, an education or Carol, who has 5 children, was focused on the hunger drive. We also secure future for your child, healthcare referred to PWSA (USA) by a Chapter planned and hosted the biennial Family, for yourself and your family, retirement, president. Her oldest daughter, Ann, is Provider, and Scientific conference in etc. 15 and has PWS. Carol and her husband Orlando that was attended by more If you are like me, in your mail are divorced; when Ann visits her dad, he than a thousand members of our almost every day is a letter (or two) lets her eat what she wants. When Carol community. asking you to support some good contacted us, Ann weighed 350 pounds If what you have read here is cause. When we respond, we often and was on a C-pap machine 24/7. We something you value, if these are things do so thinking in terms of “giving worked with the mom first to get the food you believe in for our community, then a gift” or “making a donation” to issues under control. We sent locks along I invite you to consider a gift to PWSA the organization. But what is it that with information for a 3-week menu, (USA). These are not easy economic motivates us to give? Isn’t it that, in and set up a plan for a weekly follow-up times for any of us. Some of us are in one way or another, that organization call with her. We also sent out a packet a position to give more than others. has conveyed to us that they are doing for the dad and teachers. We worked But here at PWSA (USA), we, too, are something that we value? We certainly with Carol on strategies for exercise and feeling our budget stretched at a time wouldn’t send a gift to an organization for helping Ann accept the new menu. when the demand for services is actually whose mission and work we rejected or Once the menu was posted for Ann to see, increasing. So I invite you, at the level disagreed with. she discovered that she actually had more and to the extent that you are able, to So, giving to our favorite cause is to eat than before. The food was lower consider an investment for the sake of a kind of investing. Our gift is not so calorie with a nice variety. Dad, too, is your loved one and for families across much about the money (or our time doing better about the food after reading this country and around the world volunteering) but about the value that the information about how to help Ann. impacted by Prader-Willi syndrome. is achieved through the gift. We give Now, after two months, Ann has lost 15 If you have questions or want more to an organization because we know pounds. We are also working on having information, feel free to contact me at that they are doing something in her go to The Children’s Institute in 941-312-0400, or at dcrump@pwsausa. people’s lives and in our world that Pittsburgh where she can continue the org. Thank you! ■ we believe in. weight loss. The Gathered View ~ Prader-Willi Syndrome Association (USA) March-April 2012 9 this or that possibility, she saw all these as anniversary is still hard, but my partner Men and Grief major victories. The diagnosis at this state eases me through it each year. We thank Linda Thornton, from New was “benign hypotonia”. I was conscious Yes, we men do cope with grief Zealand, Secretary of the International that I was unsupportive. My partner’s differently. Education should enable us to Prader-Willi Syndrome Organisation, and hopes were constantly undermined by cope better. I hope so. ■ parent of an adult daughter with PWS, my skepticism, actively negative, and for being an active contributor to The yet I could not break out of the “what Gathered View. This was sent to her by a will be, will be” mindset. While my Stephanie's father who had submitted it for a magazine wife wanted to talk about progress and she was editing at the time. development and testing, I just wanted to Amazing Story! I had been looking forward to the be left to myself. I had closed off—little By Lota Mitchell, Editor birth of our first child. For months I had outside myself held any interest. Fifteen years ago Stephanie Tanner, been fascinated by her movements inside A friend was a good listener, but I an Arkansas native, was 27, out of college her mother; at the beginning a little could only share at a superficial level. with a major in English with Writing fluttering and then as the months passed, Talking was not helping as the overriding Emphasis and minor in psychology. stronger, more vigorous movements. feature of “all this talk will not change Neither Prince Charming nor her dream I was present at my daughter’s birth, anything” undermined any chance of job of doing hospital social work had an experience that defied words. All healing. come along, so, influenced by having stories and films that had the birth of a The second stage was marked by a cousin with PWS, she took a job at child in them made much of the initial my waking one day and noticing the a facility for developmentally delayed birth cry. I was absolutely unprepared sun was shining. I felt warm for the first adults. for our experience; she arrived without time in months. This time pin-pointed Then she learned about a baby in a sound. I have a clear picture of the another stage: anger. Wild mood swings, California with PWS. Would she take doctor holding her up, her little mouth optimism (that our little girl would him? She flew to California and brought shaped like a cry, but there was no sound. be “normal”, that she would outgrow him back when he was five months I am unable to describe what came over this strange condition), followed by old. Kaelin had lots of serious medical me at that moment. Words like “shock, depression caused by the uncertainty of problems, but Stephanie believes that disbelief” do not even hint at what I felt. what the condition would mean long God uses everything for His purposes. My overwhelming reaction was term. I cried more now—most nights. He turned 15 in January, weighs 90 what I can only call resignation; whatever Sleep was full of curious dreams, and I pounds, does his own IEP, calculates his would be, would be, and I had no would wake up exhausted. But there was calories, and struggles with the teenage power whatever to change any of it. I less of “what will be, will be”. By now angst “but all the other kids…” was devoid of feeling. That stayed with our little girl was drawing me more and Kaelin was just the beginning. me for months. The only thing that more into her life. I felt I was able to Another call came when he was eight broke through my lack of emotion in share more of my partner’s hopes. The months old. Would she take a four- those early days was a kind of subdued future seemed much less fixed. month-old baby girl with Down’s? She elation when our little girl would actually Eventually our daughter’s strange got Reagan when she was four months swallow milk from an eye-dropper, which condition was diagnosed as Prader-Willi old, now 14, who became a heart was the only way we could feed her. syndrome. It took me a long time to transplant recipient. Eventually our efforts weren’t enough, accept this. I read all I could about the A year later the next call came, this and she had to be tube-fed at hospital. syndrome. After a time, I noticed a shift time about a six-year-old in Oregon with At work, I was an automaton. I have in what I was feeling. The crippling autism and Down’s. Mark, the oldest, is little recall as to whether I was happy resignation had given way to a hope that now 19; a year ago he developed seizures. or sad, warm or cold. I had no appetite. what was now did not have to be in the Next came Allie from Georgia, who I used to enjoy a drink. I never tasted future. My wife was already planning had an unpronounceable syndrome the stuff from this time for months counter-measures for our daughter to run which cut off her blood and oxygen at afterwards. against the classic symptoms—extra help birth, a brain stem injury. She could At the hospital, testing continued to for learning, exercises to firm up the little do almost nothing, but would let them determine what the condition might be. muscles, games to keep her stimulated. know her wishes through her eyes. Allie I became aware of how differently my Sometimes it seems a long time ago; passed away at age seven from the flu. partner [wife] was responding. She saw more often, it feels like yesterday. A kind For Stephanie, the loss of Allie was a life- all tests as a challenge. I was indifferent of emotional evenness came when she changing, terribly painful experience. to the various tests. As each eliminated was five and a wholeness at seven. The continued on page 11

10 March-April 2012 The Gathered View ~ Prader-Willi Syndrome Association (USA) were married in October, 2009. He is Stephanie, continued from page 10 semi-retired from Wall Street, has his Maali, now 11, came next when she Kaelin,15, Maili, 11 own small business, and four kids of his was 17 months old. Her birth mother and young A.J., now 7 own, one of whom, age 23, has some gave her up because she needed too much special needs, too. Perhaps that helped to care. She has severe scoliosis and has prepare him! She laughs that they have had three back surgeries. She has an odd “dates” now at the house on the couch; variation of PWS, does no food seeking she fixes her hair and dresses up, just like but likes to eat, although at times they going out to dinner. have to encourage her. She weighs 50 Number seven is their own baby, pounds now. Stephanie describes her as Charlie, now 15 months, who is just fine. a “charmer”, but is self-injurious with And to complete the family, there are severe behavior problems. “Maali” is the three dogs. Russian spelling for Mollie, which means She has an interesting technique precious; the English spelling means which she says prevents a lot of stress bitter. at holidays. Food is scheduled daily Another call—would she take a from New York, coming to her at eight without variation, including two snacks. baby from Kentucky who was difficult to months and now seven years old. He A snack can be traded (i.e., passed up place? He has CHARGE syndrome, in has textbook PWS, plus egg, wheat and and not eaten) for a popsicle stick; then which every letter stands for an anomaly, milk allergies, and weighs 40 pounds. All the stick or sticks can be traded in for a like deafness. Carson, now eight, arrived three with PWS have deletion and ask special treat, like a piece of pie. They at two months. He’s happy all the time. questions constantly. have to learn to use their sticks wisely. He and Reagan are taught at home by Right after she got A.J., Prince Stephanie’s is a life that not many a teacher who comes in because of their Charming arrived through eHarmony in of us could handle—but she says she disabilities. the form of Robert. He was from Long wouldn’t trade it for anything. For her, it Her “Asian sensation” is A.J., Island but moved to Arkansas, and they is filled with love and joy.■

work did you do over the state chapter leaders, Barb McManus years? new parent mentoring Barb: As a volunteer, and family support. is Retiring! I served on the board This part has been very Andrea: We hear you are retiring of directors of PWSA rewarding, helping the your full-time position at PWSA (USA). (USA) and was the States with organization How long did you work here? secretary for a few years. and communications (like Barb: I worked six years as a Andrea: What was Yahoo groups). There is full-time employee for PWSA (USA). the scope of your full- still so much work to be Before that, I did contract work time positions? done to ensure families and volunteered many hours for the Barb: My original can reach out to others. organization. responsibilities were office computers, Andrea: How can others volunteer? Andrea: How did you first become servers and software. Through those Barb: Everyone has some talent or interested in the organization? years, I flew to Florida from Buffalo, resources that will help PWSA (USA). Barb: I made my first call to New York many times to work You can register to volunteer at http:// PWSA (USA) in 1996 when my (sometimes through the night) on the www.pwsausa.org/help/volunteer.asp . granddaughter, Jessika, was diagnosed computers. Andrea: What’s next for you? with PWS. At that time there were only I created and maintained all the Barb: Jessika will always be my a few people working in the office, and various databases in the office, as well granddaughter, my reason for doing all the website had only a few pages of as the research database online at www. that I have done and will do for PWSA information. I called and ordered one pwsausa.org/population. I managed (USA). At this time of my life I want to of every publication they had. That was the national Web site which has grown play more golf, dance, learn pickle ball a very scary time in our lives. I’m glad to over 2,000 pages of information. and enjoy my new life in Florida. ■ that we found accurate and dependable In more recent years I managed the ~ This interview was conducted by information through PWSA (USA). National Conference registrations, The Gathered View volunteer Andrea Andrea: What types of volunteer the communication supports for the Glass. The Gathered View ~ Prader-Willi Syndrome Association (USA) March-April 2012 11 How Kids with Colleen Prader-Willi Volunteer Survive College bereavement By Colleen McMaster support Hi everyone, my name is Colleen and I am 20 years old. I was born with needed Prader-Willi Syndrome. The worst part In the past at PWSA (USA) we of having PWS is being hungry all the had our dear volunteer Norma time. I found support is the best way to deal with the hunger issues, but when (now deceased) do both calls to I was in high school, it was hard to get the families after the death of their child and create bereavement all the support I needed. I wasn’t able to college through a special program gives tell others that I had PWS. I graduated me the added support I needed. The booklets to send to each family. in 2009 with a high school diploma. advice I would like to give you is to go It adds to a family’s grief not to After I graduated, I was hired at Lifetime to college, don’t stress yourself out, and have anyone to talk to after the Assistance where I scanned documents tell others that you have PWS, whether it death of their child or sibling who for car dealerships. I worked there for two is your teachers or friends you can trust. understands the syndrome plus all years when I learned about a program The support keeps you distracted from of the issues of grieving. known as LifePrep at Nazareth College, buying food when you shouldn’t. Try it, I I would like to put out an appeal Rochester, New York. guarantee it works! ■ to our PWS community for two I have been in this program since volunteers: September and I just love it. The teachers LifePrep@Naz 1) Someone with an teach in a fun way and I get all the The LifePrep@Naz program understanding of grief to call support I need with PWS. I was able to is a program designed to provide families – preferably with a share with my teachers and peers that I individuals, 18 years and up, with counseling background and/or an have PWS. Since they know, I am able to disabilities with an opportunity to understanding due to the loss of refrain from getting food from vending go to college. This program is created their own child. machines and the cafeteria. through the collaborative relationship 2) Someone with computer I have a job at the Nazareth among Nazareth College, Victor Central graphic skills who would be willing College box office. They have a terrific School District and The Arc of Monroe to put together personalized theater program and I am able to County. The curriculum is created bereavement booklets. We can attend one performance a semester to be an inclusive program with 50% supply examples. for free. I finished my first college of the student’s time with same-aged If you are willing to be one of our course, Psychology for the Exceptional peers without disabilities. LifePrep@ next “support angels”, call Janalee Individual. There was a peer who Naz students are also supported by Heinemann at 800-926-4797. ■ attended the class with me, and I would peer mentors who are Nazareth College send her my homework to make sure I students. Mentors provide academic was on the right track. She only made support to students and promote the spelling changes. I belong to two clubs. inclusiveness of LifePrep students in J A good many years Gerontology Club where I played Bingo the campus community. For more ago, we were planning with the elderly. I also belong to the information or questions about CHUCKLE Dance Club. CORNER to attend our second LifePrep@Naz please contact: National Conference at I have made many friends on Jaime Dermody, Community Outreach Overland Park, Kansas. Joyce campus and learned there is more Coordinator seemed to be happily excited. As we freedom in college than in high school. The Arc of Monroe County boarded our flight for the trip to Kansas, 2060 Brighton Henrietta Townline Road I am able to ask for and receive support, Joyce announced, “I want to see the Rochester, NY 14623 and the teachers are flexible allowing me yellow brick road!” Phone: (585) 730-6037 to do a power point versus a paper. I love ~Sarah Abell, Kentucky college and I am learning a lot. Going to Email: [email protected]

12 March-April 2012 The Gathered View ~ Prader-Willi Syndrome Association (USA) From the Home Front

to Miranda; she is an amazing talent product, which he says is “very cold and Miranda and equally an amazing person! ■ very sweet”, visit with Whit, catch up on what he is doing and share what they I want to share one of the most ~ Anne Taylor have been doing, and leave with smiles memorable moments of my life-- mom to Darryn, 9, and on their faces. at a Miranda Lambert concert in Addie, 22 months with PWS Each year he hopes to make enough Charlottesville, Virginia. money to buy some particular item, like In May 2010 Miranda Lambert a cellphone or iPad, but each year he was on “Extreme Makeover Home Whit Park and falls short. But he still has a great time Edition”, lending both a hand and her with his lemonade stand and visiting voice to the Starkweather family of the Lemonade with all the friends, family and fellow Tulsa, Oklahoma. The Starkweathers’ Stand Oklahomans who stop by. And maybe son, Ethan, then nine, was diagnosed Winter is almost over, but how will that is really what it is all about. ■ with PWS shortly after birth. I watched the people of Nichols Hills, Oklahoma, the show, being a HUGE fan of both know when it is summer? Why, when Miranda and the ABC show; little did Whit Park opens his lemonade stand, of Some I know that one week later I would course! receive a phone call confirming our Whit Conference daughter Addison’ s diagnosis of PWS. Ever since, it has been my mission in Thanks life to fundraise and spread awareness … we loved the conference in for our cause. I wear a red awareness Orlando! It was our first one and hopefully bracelet everywhere I go, hoping that not the last. Our son Rich was thrilled to someone will ask me so I would have an meet so many other people with PWS and opportunity to speak about it. the content of the meetings was great. The My BFF Michelle and I were in the group who organized and managed the pit, very close to the stage. I decided YAP programming deserves kudos for a job ■ to do everything in my power to reach especially well done. Miranda and give her my bracelet. Early … thank you again for the in the show Miranda knelt down on the opportunity for Ben to attend the stage close to where we were. I reached Whit, born in October 1983, was YAP program. He had a wonderful over a couple of people standing in diagnosed with PWS when he was time! He was so happy to be involved front of me to hold up my bracelet. five months old. When he was six, he in something “independent” of his Once Miranda spotted me, she reached started the stand. His mother Penny Dad and myself! It was quite a new down, grabbed the bracelet and put it Park says, “Whit…and his friends experience for us. We thoroughly on! I mouthed “for my daughter”; then would sit outside and visit and hold up enjoyed the time we spent as well! It was she flipped the bracelet over and read signs, and people would stop because reassuring to meet others who face the ■ it. She finished the last verse of “More there was such a bevy of little friends very same challenges we do, finally! Like Her”, blew me a kiss--and wore having fun.” My family and I had a great time. that red bracelet for the remainder of Now 27, he lives most of the year More so, Jane got a lot of mental support the concert!!! at Woods School in Pennsylvania, but from the conference. My granddaughter Miranda may never know how as soon as he gets home for his annual Sara experienced for the first time that much what she did meant to me. In month-long visit in the summer he there are others like her and that it is OK the flood of emotion since receiving opens the stand. to be less than perfect. Going forward, she the diagnosis to all the therapies, To begin with, cups of lemonade wants to attend all conferences. Thank you doctor appointments and worries for were 25 cents each, and more than 20 for making it happen. ■ my daughter’s future and safety, seeing years later, they are still the same price. I am the mother of Kourtney, a Miranda wear that bracelet for me, for However, police and firefighters get 14-year-old female with PWS. Kourtney my daughter, for all the loved ones and theirs free, Whit’s way of saying thanks recently attended the PWS Conference people living with PWS, that I cannot for their services. in Florida. I really enjoyed being a part put into words! I will be forever grateful People will stop by for a cup of his continued on page 14

The Gathered View ~ Prader-Willi Syndrome Association (USA) March-April 2012 13 Chapter View What was the day’s agenda? Volunteers Jennifer Bolander and Jim Koerber, with the help of On The Move Committee members David Crump, Michelle Torbert, and Jodi O’Sullivan, walked the group through a slide presentation covering “PWS On The MoveSM” 2012 Fundraising and Awareness Campaign. Attendees were able to cover this topic in depth with many questions answered and many details discussed. Family Support Coordinator Barb McManus delivered State Leaders Day at Conference an excellent presentation covering November 11, 2011 Advocacy, providing attendees with By Jennifer Bolander information to take back to their As part of the 31st PWSA (USA) National Conference, approximately 26 chapters and groups such as “Ten Steps chapter and state group leaders gathered to get to know one another, talk about to Effective Self-Advocacy” and copies of their recent activities and events, learn more about the workings of PWSA (USA), her presentation. and discuss many other topics of importance. They shared advice—and got Director of Research and Medical reassurance that leading a chapter or group can sometimes be challenging! Affairs Janalee Heinemann generously Who all attended? shared her lunch hour with attendees and Alaska (Lindsay Smith) New Jersey (Sybil Cohen) provided a thorough report on the topics California (Julie Casey) New York (Amy McDougall, Nina and projects being worked on in the area of PWS research. Colorado (Lynette Hosler) Roberto) Barb McManus and Jennifer Connecticut (Jeannette & Tom Young) Ohio (Jennifer Bolander) Bolander led a presentation covering the Florida (Michelle Torbert) Pennsylvania (John & Donna Forster) topic of “Growing and Expanding Your Georgia (Debbie Lange) Tennessee (Dianne Bryden, Steve Chapter”, which was helpful especially Idaho (Jim Wells) Asbury) for those participants whose groups or Indiana (Jim Koerber, Amy Pfeiffer) Texas (Lindi Kessinger) chapters are just starting or are re- Michigan (Eric Macks) Utah (Lisa Thornton) starting. Minnesota (Jim Gardner) Wisconsin (Crystal Boser) Steve Leightman led a discussion Nebraska (Paige Rivard) of the relationships chapters and state

groups have with PWSA (USA), which John Heybach, chair of the PWSA (USA) board and Ken Smith, vice-chair, sat aspects of those relationships work well in on a portion of the morning session. Interim Executive Director David Crump, and which may need improvement. Family Support Coordinator Barb McManus, Development/Communications It was a day packed full of useful Associate Jodi O’Sullivan, and PWSA (USA) board members Steve Leightman and information and great discussion. A Jim Koerber not only attended the entire day but were of great assistance with the heartfelt “Thank You” to everyone who planning and implementation of the day’s agenda. helped to make it a success for all who attended! ■ Thanks From Joan and Jim Gardner, PWSA Thanks, (USA) Lifetime Achievement Award continued from page 13 recipients (along with Jim Kane) at of the 6-12 year-old group and received the National Conference valuable information and sometimes Jim and I would like to thank PWSA just comfort in reading others’ stories. (USA) for the special recognition, which Thank you! ■ we received at the national conference. We feel quite unworthy and humble. It is all work with you and meet so many new of you, the members, who should receive friends through Prader-Willi syndrome. this honor. We have been privileged to Thank you for this gift. ■ 14 March-April 2012 The Gathered View ~ Prader-Willi Syndrome Association (USA) Thank you for Contributions in December 2011 and January 2012. We try to be accurate in recognizing Contributions contributions above $25, and apologize for any errors or omissions. If you notice an error, please tell us. Major Benefactors ($500 and more) Laura and Anthony Abbott Angela and Mark Hughes Daniel and Sara Jane Pate David and Janice Agarwal Clint and Karla Hurdle Joe and Joyce Peden Raymond and Louise Bagg Clint and Louise Hurdle Lori and Terry Price Roy and Claudia Baggerly Linda Husar Charles Ranberg Norman and Cynthia Barkeley TTEE Johnson & Johnson/CitiGroup Employee Giving Program Jacque Reid John and Mary Ann Bellanti Sue Keen RGK Foundation Robert and Alicia Bernstein Kennedy Space Center Federal Credit Union John and Carolyn Rodman Daryl and Monique Bethea Elizabeth Kenney Tom and Lorrie Russo Bridgewater Associates Marjorie King Richard Ruzicka, Jr. James and Dolly Brien Jim and Rita Koerber Mark and Linda Ryan Chris Brophy Bonnie Kraft Christopher Salaski Busey Wealth Management George and Lee Ann Kuntz Sandefur Schmidt Merlin and Ranae Butler Jerry Ladnier, Sr. Joseph and Rosemarie Schreier Capraro Family Foundation Nathan and Haley Lambright Securus Group Lois Carson Steve and Michele Leightman Gary and Sharon Seedorf David and Mary Beth Cass Living the Dream Foundation Curt and Marion Shacklett Mitchell and Francine Cohen Tracey and Bart Lombardi James and Denise Steck Franca and Larry Copeland Jean Lowe William Stege Russell and Jane DeFauw Ying Lu Andy and Estee Summers Peter and Kathy Devlin Richard and Patricia Lutz Alice and Peter Tenbeau Ross and Jane Dudley Jill and Paul Lynch Sid and Lisa Thornton Jim and Joan Gardner Sue and Paul Mahler Torbert Produce Inc Martin and Gladys Gillette Mitch and Sondra May James Trentacosta Nick and Carolyn Gordon Marty and Fran McLean Jack Tsao Y Marc and Shoko Gotoh Kim and Lonnie Meredith James Van Becelaere Company Inc Robert and Cecilia Harrison Janice Mobilia Yulius Pollyansky and Marjorie Velasco Tim and Carol Hearn Susan and Tom Nebel Steve and Lois Willett Janalee and Al Heinemann Olson Family Foundation Douglas and Carrie Yakola Jay Coggeshall and Susan Henoch Pappagallo Family Foundation Frances and Allan Zalesky HP Company Foundation Bob and Margaret Parker

In Memory of

William T. Allan Ilse and David Gay Roger and Jewell Abke Karl and Sharon Cressman Paul Allan Dave and Linda Heck Bernardine Arnold Edward Gordon Susan Ballester Paul LaRiviere and James Lipsett Ann and Ned Durell Richard and Eleanor Weiner Jane Cannavale Serafino Centrella Paul and Julieann Ebaugh Dawn Elynne Gotoh-Stevens Flo and Vince D’Elia The Prudential Foundation Carol Fahy Bruce Neel George and June Devine Matching Gifts Patricia Fekete Jay Headley Anita and Carey Heber Ben Centrella Charlene and Gordon Kerner Kerry Headley Joseph and Susan Higgins William and Donna Jallick Pat and Larry Linton Andrew Hill Land-Tech Consultants Inc. Diane Chausow Steven Oliveri Glenn and Sandra Kitchen Raymond and Mary Luther, Jr. Hy and Ruth Chausow Frances Panneton Blake Hunter Carol and Charles Marshall Catherine Cunningham Elizabeth Pettersson Friends at Cajun John and Joan Martel Jeannine Fallon Stanley and Anne Romanowski Gayle and Alcide Hunter Charles and Marilyn McAlpine Stephen Dam Diane and Eric Scholl Jodi and Mike Luckoski Publishing Technology Inc. Sandefur Schmidt Don Oliver and Diane Spencer Renee Melancon Thieme Medical Publishers Inc Christopher Democh Sheila Terhune Jerry and Brenda Nicks Redniss & Mead Mary Lagana Michael J. Fabio John and Donna Pellegrini Peter and Robin Romano Colleen Doherty Sandra Henry Rene and Gail Philibert Lillian Wooster Julianne Hoff Valentina Falzone Lelia St. Pierre Andrew Bosma Marcia Dunn Craig Mitchelldyer John J. Juranich Patricia Cademartori Law Offices of Mark A. Cuthbertson John Frisch Maria and Kevin Dunn

The Gathered View ~ Prader-Willi Syndrome Association (USA) March-April 2012 15 Thank you for Contributions in December 2011 and January 2012. We try to be accurate in Contributions recognizing contributions above $25, and apologize for any errors or omissions. If you notice an error, continued please tell us.

In Memory of

Mark List Johnae CarolAnn Mayo Perla Rodriguez David Unger Sandra List Joseph Bradley Kevin Sarkissian Richard and Lori Alonso Jean Lowe Colleen Mercer Alexander M. Signorini, Sr. Brewster Education Foundation Inc. Kit and Molly Sumner Timothy Lawson First Niagara Bank Sherry and Alec Goldfarb Sophie Matson Samia Nomani Mary Pascoe Robert Carpenter and Susan Phyllis Uzendowski Carlo and Eleanor Bergonzo Frank and Nancy Rodriguez Schwarz Charles “Clyde” Mays Mary Grace Pflieger Charles (Chuck) Trentacosta Mark and Annmarie Shisler Hope Mays Jill Peach James Trentacosta

In Honor of

Oliver Alden Barrett Sophie Grace and Samuel James Headly, Jr. Siena Mehta Gillian Segall Prudence and Tom Nelson Coggeshall Terry or Marabeth Neva Shah Rick and Caryn Segall Alex Agarwal Jay Coggeshall and Susan Kleczinski Sara Mirzai Ray and Lisa Shirk Avadh Agarwal Henoch David Hearn Vanessa Hew Berkshire Agency Inc. Benjamen Allour Bob and Cindy Cohen David and Mary Beth Cass May Woei Edward and Cynthia Amber Myers Alan and Nancy Hoffman Jayden Hedstrom Jentry Mitchell Blough The Alterman Family Lindsay Cohen’s 1st Birth- Steve and Linda Hedstrom Billy and Kathy Hyatt Cynthia Blough Morgan Stanley day Morgan Heffner Robert and Cathy Mook Securus Group Robert Zerden Franki and Evan Cohen Randy Heffner Jean Mook Thomas Dondore Aimee Atwood Madison Copeland Collin Hughes (Ret) Col. and Mrs. Wallace Jerome and Jean Hoff Tim and Dawn Atwood Franca and Larry Copeland Christy Fox C. Mook Sandra Kelly Pascal Bachli The Crenshaw Family Angela and Mark Hughes Jean Mook Sylvia Snider Roman Bachli Lisa Hollins Madison Reilly Hurdle Faith Morse Elizabeth Hirshorn Hayden Bagg Dash James and Kristi Barker Jean and Joe Gunning Brent Sugimoto Raymond and Louise Bagg Jennifer Ray Wayne and Anna Schuberg Kira Nadler Kayleigh Steck Rebecca Baird Jessika Dickinson Meaghan Hussey Ben and Raina Nadler Denise and Bill Fleming A C General Carolyn Church Catherine and Patrick Collin Norton James and Denise Steck Linda Lee Barnett Riley Donovan Hussey Deborah and Jeff Norton Ed and Linda Szapacs Nancy Kenner Eneric Petroleum Corp Donna Johnson Callie O’Connor Sandra Karlson Oliver Alden Barrett Johnny Erickson Pat and Joanne Angela and John Grillo Troy Toby Prudence and Tom Nelson Teresa and Jeff Erickson Cunningham Katelyn and Meghan Donald and Ken Toby Samantha Barrick Lois Schmitz Knopf Family O’Neil Kentuckiana Yacht Sales Mary Barrick Olivia Faasen Marianne and Joseph Jack and June Bonney Ridley Grace Underwood Hannah Marie and Betty Jean and John Faasen III Mione Lillian Peden Janice and Paul Griggs Behnken Jacob Ryan Fanfa Chris Krambeer Family Joe and Joyce Peden Gerry and Chris Waldrop Ken and Betty Behnken Alameda County Human Knights of Columbus Tyler Matthew Price Will Murray James Benoit Resource Services Makenna Lamb Jerry Ladnier, Sr. Jason Waldrop Hillsdale United Methodist Arola Ferrer U S Bancorp Foundation Lori and Terry Price Will Murray Church Youth Group Jeff Bird and Eulalia Ferrer Mackenzie Nevada Austin Reed Avery Lauren Waldrop Brandon Bernstein Luke Daniel Fichter Legerski Christopher Salaski Peter and Kathy Devlin Justice Faith Rickenbach Robert and Alicia Bernstein Darren and Amanda Fichter Terri Misseldine Pamela Young Suhani Bham Jacob Fiske Ben and Janis Leightman Dan Hellickson Cameron Wallace Jacob Dean Rivard Saket Satta Keith and Katie Boeck Anna Leightman Chris and Catherine Barras Andrew Bosma Rick and Janet Carlson Josilyn Faith Levine Mitch and Sondra May Katie White Judith Rivard Larry Temple Walt and Marge Foran Michelle Dutcher Ed and Linda Shiflett Joshua Burke Donna and Tony Franco James Ma Judy Dobbs Paul and Amy Wissmann Brett Rogers Marsha Samuel Bob and Patty Dion HP Company Foundation Elwood and Mary Jane Linda Steppe Lea Capraro Joseph Frazier Albert and Tuong-Trang Wissmann Maddox Rutledge Merrick and Gail Bromberg Patricia Hayes Chang Heather Woolman and Michael Rutledge Bill and Nancy Dvorak Gavin Gill Ramon Madrid, Jr. Debbie Pahikot Steve Rutledge Timothy and Andrea Ryan and Evan Jaco Kelly and Patrick Gibbs Ellen Bauman Andrea Saacks Radigan Francis Girard Isaac Maney Tom Young Leora Zabusky Ryan Casey Ingrid Deane Robert Whitney Madeline Young Lily Clare Schactman Heather Hessel Alexandria Gotoh Gregory McCarthy Gerald Cregar Bianca Cimpeanu Y Marc and Shoko Gotoh John and Florence Sharon Schactman Adina Nicola Alexescu Christopher Guenther McCarthy Michael Schaupeter Shirley Malamut Joyce Bearss Marie McCarthy Grosse Pointe Yacht Club Yulius Pollyansky and Claudia Haverfield Ally McLean Robert and Deidre Valko Marjorie Velasco Dan and Kim Bonenberger Marty and Fran McLean Christian Coats Shanin and Gage Jacob Means Laura Schutz Jim Martin Haverfield Kathy Shaffer Arlen & Elaine Cohen Rubin Charitable Fund

16 March-April 2012 The Gathered View ~ Prader-Willi Syndrome Association (USA) The following names are those who donated to the2011-2012 Angel Drive. either In Honor of (IHO) someone very special to them or In Memory of (IMO) a person whose memory is deeply treasured. Angel IHO Parker Cheney Robyn Geller Peter Ingalls Emma Love Ian Adams Gabrielle Wohlman Myra Cohen Mary Ingalls Patricia Love Lois Glass Brian Cheng Gavin Gill Lionel and Cynthia Lamoureux Jackson Lowe Michael Alterman and Katie Mercedes Lat Rosemary and Joseph Carr First Congregational Church Jean Lowe Rosenburg Christian Coats Patty and John Hickey Sunlighters Madison Lucas Roy and Mable Meeks Jim and Judy Coats Michael Girdaukas Jessica Jacobus Mary and Ernie Kolar Kandra Anderson Sybil Cohen Martha and Gary Girdaukas Debbie and Nathan Jacobus Isabel Lutz Maxine Henderson Jane Rose Brian Glasgow Julien Jernigan Andrew and Laurie Braun Nicole and Stephanie Appel Jennifer Collom Liz and Bruce Fletcher Maurice and Irene Jernigan Evan Macks Charles and Ellen Alpaugh Sally and Chet Collom Sienna Grace Godfrey Myrna Toungette Lisa and Steven Wodtke Stephanie Appel Jace Coltrane Lois and Robert Bascom Jonathan Jones Christian Maierhofer Heinrich and Anna-Maria James and Wava VanBecelaere Cameron Graziano Columba Gentile Jeanne Carteaux Froehlich John Ross Comes Lisa and TJ Graziano Payton Jones Janet and Keith Schuman Frankie Arnold John and Susan Comes Chuck and Melinda Morrow Carol and Jerry Williams Michael Mancheno Bryan and Dorothy Hollenbach Emily Costa Zach Greenberg Lillian Jordan Jessica and George Kruse Rebecca Baird Chris and Sam Costa Wendy Kochevar Susan Bumpous Matthew Mansourian Brian Baird Elizabeth Prochazka Louise Greenswag’s Birthday Kate Kane Pappagallo Family Foundation Lois and Jeffrey Pallotta Jane and Melica Cramer Norma Brecher Sheila Maloney Andy Maurer The Baird Family Owen and Becky Cramer Donna Siegel Lesley Keder Stewart and Bronnie Maurer David Klein Emily Curran Noah Griffiths Daniel and Sharon Keder Ryan McCarthy Stephanie Lynn Baker Jacque Reid Chris and Mike Turcola Julia Kenney Patrick T. McCarthy, Realtor Richard and Darlene Smith Brooke Detiege Alexandra Grussing Elizabeth Kenney Ellen McDonald Katrin Baldwin Tom and Darlene Benoit Ann and Paul Grussing Grace Kercheville Pam and Nelson Bowers Harlan and Birgit Baldwin Jon and Debbie Kuchenberg Chester and Roberta Lonnquist Charles and Nancy Hartwigsen Ann Eliot Hon Linda Barnett Jeanette Schoen John and Karen Meslow Lauren Khourie Ronald and Sue McNeil Robert and Deanna Barnett Sandra and Ken Schoen Brody Haggard Pat Bacon-Brandt Mary McDonald Kyle Barton Jessika Dickinson Donald and Ruth Wojna Tommy Kir Martha McDonald and Art Coye and Kathleen Barton John and Mary Ann Bellanti Zakerski & Company William and Diana Kirchhoff Jakubiak John Basso Riley Donovan Rafi Handwerger Joshua Klarman Ginny McMahon Mark and Linda Ryan Lois Zeman Samuel Handwerger Edward and Karen Klarman Joe and Joanna McMahon Michael Bebrin Jacob Douglas Michael Harnden The Klauber Family Daniel and Sara Jane Pate William and Rhonda Earle James and Judith Austin Glen Harnden Elisabeth Voce Heather Meade Hannah Behnken Gloria Fisher Claudia Haverfield Janilet Knox Carol and Richard Medina Bob and Jane Easton Madelyn Rose Dull Valerie Beihl Ken and Maria Knox Pamela Minos Gary and Sharon Seedorf Linda and Richard Dull Karen Coffield Alison M. Koerber Raymond Giblin Noel Bensaid Caylee Edwards Don and Marie Sinon Jim and Rita Koerber Sara Mirzai Douglas and Wanda Terrell Karen Abrams J. R. Headley Marco Kolcheff Jane Hew Madison Berl Anwen Elder Mark and Kim Cummings Elaine Proctor Lota Mitchell Phil DuBois John Van Valkenburg Lisa and Robert Stafford Bonnie and Jenny Kraft Ron and Ila Oakes Sam Bladel Luke Eurillo Sean Healy Peter and Nancy Hessert Elise Montegut Joanne Bladel Robert and Linda Chomko Roger Healy Debbie Kubichek Richard and Diane Montegut Isabella Bocanegra Stephen Fabio David Hearn Luis and Judith Kubichek Crosby Mook Carmen Torres David and Judith Fabio Sue and Paul Mahler Jack Kuna Hope and Nelson Leonard Sophie Bolander Erin Favret Abby Heathman Darwin and Hildy Brown Harper Dean Morris Richard and Jackie Bolander David Austin Mike and Jan Baum Mike Kuna and Family Sandra Jarrett Ellen Booker Rick Favret Janalee and Al Heinemann Curtis Shelley Julia Morrison Douglas and Paula Thompson Dolores McCullough Dan Glazier and Nancy Snow Ricky Lacy John and Sheila Canney Roger and Sara Wenner Ashley Fender Foran Hendricks Maureen McCoy Melissa Moss Savannah Brice Katherine Radaz James and Peggy Hardy Noah Lauer Fran Moss Marsha Gamelin Wayne and Karen Wendel Sara Henry Dolores Ferrier Katie Barcellos Mueller Laden Briggs Tristan Ferdig Ozmer Henry Jr., M.D. Hannah Rose Leigh Carole Kearney Myra Briggs Bobbie Boetel Eddie Hiatt Roy and Claudia Baggerly Luke Mukoda Amber and Ronald Genova Mark and Penni Coatney Susan Wagner Michele and Steve Leightman Masaru and Alice Kazaoka Pete Rivera Frank and Karen Washburn Ben Hopkins Floyd Spechler M.D., P.A. Robert and Darlene Mukoda Paul Brindisi Jacob Fiske Byron and Betty Hopkins Brock Lemmons Darryl and Daphne Sumrall Philip and Teresa Petragnani Rick and Janet Carlson Allison Holthoff Beth and Chris Dristas June and Dick Wallace Isabella Burnham Ross and Jane Dudley Kristin Ianni Peter and Darlene Giannini Jean Nealis’ 103rd Birthday Joanne DeYoung Brennen Fletcher John, Sue and Sam Hruska Kevin Leonard Johanna Balkie Nicholas Busfield Sean and Patricia Keating Paul and Betty Kramer Rose Friedeborn Randall Nordfors, Jr. Lenore Trimmel Ryan Fochs Collin Hughes Rachel Levy Spencer and Elizabeth Nordfors Emily Bush Harlan and Melba Hamlin Christy Fox Diane Hoefer Kate and Meghan O’Neil Charles and Margaret Bush Rachel Ann Forster Angela and Mark Hughes Jett Lewis Maureen and Chip O’Neil Jeff Bush Sandra Forster Clint Hurdle Deborah Fall Cindy Organ Beverly and Harvey Bush Emma Funk Drew Jacobs Jack Lindsey Ray and Ruth Organ Lea Capraro Robert Funk Madison Hurdle Dennis and Jennifer Lindsey Aiden Wayne Painter Bernadette Berardi - Coletta Susan Gannon James and Nell Entinger Halle Loney David Terry Susan and John Cassidy Sandra and Richard Gannon Francis and Barbara Glenski Frank and Karrie Prebeck Michael Pajon Rachel Casey Jack Gardiner Jeffrey Gold Kasey Longworth Mayra Rubio Patrick and Filippa Casey Ed and Rose Maloy Gene and Mary Goldin Carlile Robertson Gregory Robert Parker Ryan Casey Corbin Garrett Instructional League Natalia Lopez Bob and Margaret Parker Julie and Dan Casey Tom and Joan Garrett Ralph Noistering Andrea Hidalgo Katherine Pate Helen Sheehan James and Dolly Brien

The Gathered View ~ Prader-Willi Syndrome Association (USA) March-April 2012 17 The following names are those who donated to the2011-2012 Angel Drive. either In Honor of (IHO) someone very special to them or In Memory of (IMO) a person whose memory is deeply treasured. Angel IHO, continued Jerri Pate Penny LoPresto Carter Shingleton Tyler Stoeck Phillip Waln Jake Pawulak Mitchell and Sherie Russo David and Marianne Shingleton Robert and Anny Stoeck John and Verna Christopher David and Linda Bossler Lyle and Joan Johnson Janet Colturi and Troy Shingleton Julie Suzanne Straub Brenna Walsh Art and Beth Kane Jolee Rutenber James and Susan Shortley Meribeth and Vinson Straub June and Kevin Creagh Anne Hobday Alan and Diane Crone Kenneth Shoemaker Szapacs Family Richard White and Beverly Jacob Perrault Joe Schaaf David and Jane Shoemaker Henry and Karen Naisby Purrington George and Barbara Perrault Ron and Marilyn Schaaf Brenna Siegfriedt Daschel Szapacs Paul and Christine Saraceni Roxanne Peterson Lily Schactman Mark and Maria Siegfriedt Jose and Karen Arencibia Taylor and Lizzie Warren Gloria and Orrin Anderson Janet Stromberg Mary Katherine Simon William and Joan Harmer James and Bronda Curtis Brooke Pfeiffer Michael Schaupeter Jessica Vincent Maximillion Sznaj David and Sandra Johnson AMS Enterprises Inc. Susan and Robert Lindahl Mikhel Sinclair Wanda Buccheri Taylor Warren Lauren Pfeiffer Kathleen and Dominic Morinelli CTL Title Insurance Agency Inc. Leslie Torbert Stacey Johnson Barbara Williams Aubrey Scheer Angela Emanuele TTE Patricia Dunbar Griffon Westburg Mykenna Phernetton Colleen and Ken Lamb Adam Sklar Homestead Air Conditioning & Jean and Roger Parent Mary Holmstead John Scott Schneider Mort and Joy Perchick Heating Erik Westenfield Sydney Planton Mary Schneider Zoey Slightom Sherri and Kirby Johnson Karl and Denise Westenfield Carla Bailey Lyndsey Schultes Dave and Diane Lentz Torbert Produce Inc John J. Wett Lorrie Prettyman Chris Brophy Brayden Smith Sandra and Sam Wood Marilou Wett Amy and Chris Evans Jack and Donalyn Brophy Kim and Lonnie Meredith Tommy Torbert Naomi Willinsky Kenneth and Ruth Prettyman Agnes Schultes Bobby and Norva Smith Nancy Lynn Marc and Elyse Russman PWSA staff and PWSA’s great John and Krista Stapleton Madison Smith Carolyn Turner Katie White work! Ryan Schwantner Carolyn Cheeseman John and Katie Nichols Dorothy and Ah White, Jr. Ralph and Jean Heller Astro Rigging Corp. Jacob Soncarty Ridley Underwood Landon White Kiley Quinn Reagan Seely Donald and Glenda Grimm Sally Stockton David and Ann McLean Elizabeth Elkovich Maureen Bruce Gerald and Janice Mitchell Hunter Valant Naomi Willinsky Chelsea Reddinger Michael and Judy Fitzpatrick Molly Speiser James and Katharine McGuire Richard and Eleanor Weiner Gerry Silverberg Robert and Linda Joyce Patricia Pelszynski Maria Vucci Rania Williams Martina and Marcello Redwick Gillian Segall Clinton and Mary Speiser Robert Butcher and Cynthia Nahla Harik-Williams and Chris- George Ternes Terri Lipsitz Christina Spradlin Clarke tian Williams Austin Reed Hudson and Lily Self Alice Bell Robert and Sabrina Worrell Truman Willoughby Richard and Ann Conway Perkins & Lund, PLLC Mike and Jeanne Spradlin Avery Lauren Waldrop Barbara Miller Ashlyn Ricardo Maxx Van Loben Sels Robert Staller Gerald and Christine Waldrop Alden Young Elizabeth and Wayne Morse James and Joan Van Loben Sels Nora Staller Katy Walker Peter Chester Amanda Riha Maya Servais The amazing staff at Stepping Sherrod Braxton Charles and Marcie Young Susan and Tom Nebel John and Carol Lietzow Out Inc. Cameron Wallace Jacob Ziliox Connolly Roach Natalie Shapowalenko Marc and Shira Shapiro Mary and Joseph Bascone Helen and William Mullins Nathan and Haley Lambright Oksana and Ihor Shapowalenko

Angel IMO Renee Davis Jay Headley Dorothy Lehman Gary Rica Robert Alexander Jim and Christa Davis Lisa and Robert Stafford Eloise Logan Delores Rica Gary and Glenda Pyles Colleen Doherty Blake William Hunter Jr. Jeff Lipp Lindsay Rich Gail Allan Dedicated Leasing Inc. Renee Melancon Charles and Margaret Lindsey Cathy Ameling William and Jeane Allan Bill and Connie Devitt Lucille Hurdle Samual MacNutt William Paul Richardson William T. Allan Susan Dyer Martin and Gladys Gillette Edith MacNutt Barbara Thomas Charles and Marilyn McAlpine Andrea Glass Nancy Janes David Mears Taelor Alexas Roenigk Daniel Alvarez William J. Finn, Jr. Jean Janes Frank and Cecilia DiMarzio Jean Roenigk Catherine and Rudy Alvarez Harriette Kelleher Phillip Ray Keen Ray Mears Adam Romagnoli Ruth Aydelotte John Frisch Sue Keen John (Jay) Miller Janalee and Al Heinemann Thomas and Carole LaBossiere Walter and Phyllis Bothwell April Kennedy Mary Miller Vera Ryan Deborah Barkeley Alvina Frisch Jeffry and Patsy Kennedy David Scott Mitchell Ed and Kay Griffith Norman and Cynthia Barkeley Jeremy Girard John Kraft Lota and Dave Mitchell G. Jon Skulason TTEE Colleen Girard Amy and Robert Stack Marion Pacetti Herdis Skulason Annette Baudo Martha Goldstein Gregory Kremer Andrea Glass June Smith Carol Matza Rose Weeks Michael and Patricia Kremer Aaron Percy Roy and Marjorie Smith Page Bintz Jill Goodman Martin Lawlor Steve and Verla Percy Isabella Rosalie Stahl John and Marilyn Bintz Marion Goodman Mathias and Connie Sullivan Stewart Pike Vincent and Sheila Ciraco Mark Bubier Sidney Greenswag Debbie A. Leatherberry Margaret Bruynell and Bobbie Jack and Lucille Wehner David and Hildy Bubier Louise Greenswag, R.N., Ph.D. Richard Leatherberry Jarvis Al and Linda Kennett Francis Cowen Marie Hall Mr. Lee Kathleen Ranberg Ray and Marjorie Zimmerman Joyce Haithcock DBA Jubilation Antiques Stephen and Catherine Berar- Charles Ranberg Robert and Janice Christ dinelli Jenell Rud

Prader-Willi syndrome (PWS) is a birth defect identified in 1956 by Swiss doctors A. Prader, H. Willi, and A. Labhart. There are no known reasons for the genetic accident that causes this lifelong condition, which affects appetite, growth, metabolism, cognitive functioning and behavior. Prader-Willi Syndrome Association (USA) was organized in 1975 to provide a resource for education and information about PWS and support for families and caregivers. PWSA (USA) is supported solely by memberships and tax-deductible contributions. To make a donation, go to www.pwsausa.org/donate

18 March-April 2012 The Gathered View ~ Prader-Willi Syndrome Association (USA) USA 8588 Potter Park Drive, Suite 500 Sarasota, Florida 34238 800-926-4797 ~ 941-312-0400 Fax 941-312-0142 [email protected] www.pwsausa.org

Our Mission: Prader-Willi Syndrome Association (USA) is an organization of families and professionals working together to raise awareness, offer support, provide education and advocacy, and promote and fund research to enhance the quality of life of those affected by Prader-Willi syndrome.

Staff & Other Key Contacts Officers & Directors Chair - John Heybach, Ph.D., Chicago, IL Dan Driscoll, M.D., Ph.D., Gainesville, FL David Crump, Interim Executive Director Vice Chair - Ken Smith, Pittsburgh, PA Michelle Holbrook, Lehi, UT Janalee Heinemann, Research/Medical Affairs Secretary - Julie Doherty, Tallahassee, FL James Koerber, Corydon, IN Treasurer - Bert Martinez, Bradenton, FL Stephen Leightman, Cherry Hill, NJ Debi Applebee, Business Manager David M. Agarwal, M.D., F.S.I.R., Zionsville, IN Jackie Mallow, Oconomowoc, WI Kate Beaver, Alterman Crisis Counselor Michael Alterman, Atlanta, GA Lisa Thornton, Salt Lake City, UT Jamie Bassel, D.C., New York, NY Michelle Torbert, Homestead, FL Cindy Beles, Triage Advocate Gregory Cherpes, M.D., Pittsburgh, PA Mary K. Ziccardi, Cleveland, OH David Crump, Development Coordinator Evan Farrar, Crisis Counselor Scientific Advisory Board Jim Kane, Research Advocacy Chair - Merlin G. Butler, M.D., Ph.D., Kansas University Medical Center, Kansas City, KS Chair Emeritus - Vanja Holm, M.D., University of Washington, Seattle, WA Vicki Knopf, Parent Mentoring II Suzanne B. Cassidy, M.D., University of California, San Francisco, CA Barbara McManus, Web and Database Support Anastasia Dimitropoulos, Ph.D., Case Western Reserve University, Cleveland, OH Joe Donnelly, Ed.D., University of Kansas, Lawrence, KS Jodi O’Sullivan, Development/Communications Elisabeth M. Dykens, Ph.D., Vanderbilt University, Nashville, TN Gus Schrowang, Communications Specialist Sue Myers, M.D., St. Louis University, St. Louis, MO Robert Nicholls, D. Phil., Children’s Hospital of Pittsburgh, Pittsburgh, PA Lin Sherman, Accounting & Systems Assistant David Stevenson, M.D., University of Utah, Salt Lake City, UT Michelle Torbert, Conference Chair Rachel Wevrick, Ph.D., University of Alberta, Edmonton, Alberta, CN David Wyatt, Crisis Counselor Emeritus Barbara Y. Whitman, Ph.D., St. Louis University, St. Louis, MO

Members Only: See our Web site, www.pwsausa.org, Clinical Advisory Board Chair - Daniel J. Driscoll, M.D., Ph.D., University of Florida Health Science Center, Gainesville, FL for downloadable publications, current news, current David M. Agarwal, M.D., Indiana University School of Medicine, Indianapolis, IN research and more. Limited to members only. Moris Angulo, M.D., Winthrop University Hospital, Mineola, NY User Name: pwsamember Gregory Cherpes, M.D., The Children’s Institute, Pittsburgh, PA Password: OTM2012! Marilyn Dumont-Driscoll, M.D., Ph.D., University of Florida Health Science Center, Gainesville, FL Note: If you have difficulty logging in, please contact Janice Forster, M.D., Pittsburgh Partnership, Pittsburgh, PA [email protected]. Linda Gourash, M.D., Pittsburgh Partnership, Pittsburgh, PA Bryan Hainline, M.D., Ph.D., Riley Children’s Hospital, Indiana University School of Medicine, IN E-mail Support Groups: Jim Loker, M.D., Bronson Methodist Children’s Hospital, Kalamazoo, MI We sponsor nine groups to share information. Jennifer Miller, M.D., M.S., University of Florida, Gainesville, FL Go to: www.pwsausa.org/egroups Sue Myers, M.D., St. Louis University, St. Louis, MO Todd Porter, M.D., M.S.P.H., Children’s Medical Center, Denver, CO The Gathered View (ISSN 1077-9965) Douglas Rose, M.D., Cincinnati Children’s Hospital Medical Center, Cincinnati, OH Editor, Lota Mitchell Ann Scheimann, M.D., M.B.A., Johns Hopkins School of Medicine, Baltimore, MD Andrea Glass, Denise Servais Norma Terrazas, R.D., L.D., Texas Children’s Hospital, Houston, TX GV Designer, Sara Dwyer Harold J.P. van Bosse, M.D., Shriners Hospital for Children, Philadelphia, PA Barbara Y. Whitman, Ph.D., St. Louis University, St. Louis, MO Published bimonthly by PWSA (USA) as a membership Liaison Members benefit. Annual U.S. membership: $50 (individual, family, or Suzanne B. Cassidy, M.D., Scientific Advisory Board agency/professional). Annual membership outside the U.S.: Janalee Heinemann, M.S.W., Director of Research & Medical Affairs, PWSA (USA) $60 (individual, family, or agency/professional). We never Ken Smith, Board of Directors, PWSA (USA) deny parents membership for any reason. Professional Providers Advisory Board Medical information published in The Gathered View is Chair - Jackie Mallow, Prader-Willi Homes of B. J. Goff, Goff Associates Disability Consultants, not a substitute for individual care by a licensed medical Oconomowoc, WI Springfield, MA professional. Patrice Carroll, Advocates, Inc., Framingham, MA Kim Stevens, Volunteers of America, Tulsa, OK Jeff Covington, Catholic Charities Services, Albany, NY David Wyatt, PWSA (USA), Sarasota, FL Steve Drago, ARC of Alachua County, Gainesville, FL Mary K. Ziccardi, REM Ohio, Inc., Valley View, OH Deadlines to submit items Kate Beaver, PWSA (USA), Sarasota, FL to The Gathered View are: Adults with PWS Advisory Board Dec. 1; Feb. 1; Apr. 1; Shawn Cooper, Georgia Kate Kane, Maryland Margaret Miller, Pennsylvania June 1; Aug. 1; Oct. 1 Brooke Fuller, Michigan Lauren Lange, Georgia Abbott Philson, Maine Conor Heybach, Illinois Andy Maurer, South Carolina

The Gathered View ~ Prader-Willi Syndrome Association (USA) March-April 2012 19 NON-PROFIT ORGANIZATION U.S. POSTAGE 8588 Potter Park Drive, Suite 500 Sarasota, FL 34238 PAID PERMIT NO. 1 MANASOTA, FL e-Bulletin... Reminder – stay informed and stay current with PWSA (USA)’s free weekly e-Bulletin. Sign up today at www.pwsausa.org!

Counselors Corner It’s Time to Think about Summer Camp! Summer camp is a great time for you start the research, the better chance Behavior Management - Some both youth and adults who have PWS. you have that there will be an opening camps have very strict rules about It can be a fun-filled exciting time that for your loved one. behavior issues. You will want to allows your child to develop some social Here are some questions to ask when know this in advance. Do counselors skills and meet new friends. It also researching a camp: receive special training on behavior allows time for everyone to have a bit Knowledge & Experience with management? What type of approach of respite. Knowing what camp and campers with PWS - Have they served and consequences do they use? Are the at what age is best for your child is a campers with PWS? Do they have a consequences negative reinforcement or decision that each parent/provider needs PWS-specific program or week? Do they positive reinforcement? to make. understand or are they willing to learn Send information about PWS and Sending a child to summer camp more about PWS? Are you willing to your child to the camp staff. Let them may cause some anxiety about the camp teach and assist in this learning? know what works for your child and and concern about the safety of your Health Services - Do they have a what doesn’t. Include suggestions on child--will the dietary and food-seeking nurse on duty? Who is responsible for how to avoid food and behavior issues needs be met? administering medications? If a person and how to apply strategies that will help There are many camps in the U.S. becomes ill, what is done? the camper. that serve children and adults with Include a health brochure so they Diet and Meals-Serving Style - Do disabilities. Some offer a variety of will be sure to be aware and understand they accommodate special diets? How programs; some may be more specialized. some of the unique health issues that the are meals served? Will they serve and Some even have weeks that are just for camper may face. ■ monitor food for the person with PWS? people who have PWS. ~ Kate Beaver Is there food that is easily accessible Because most camps have a limited Crisis Counselor number of slots, the earlier in the year to the person with PWS?