Prader-Willi Quarterly Pulse April 2020 : simplebooklet.com

Welcome to Our Future2020 starts a new and exciting decade, years in which we’ll experience a faster rate of change than ever in human history.Our goal at PWSA (USA) is both to support you in this time of change, and to shape changes that “Enhance the quality of life and empower those a ected by Prader-Willi syndrome,” which is our mission. How communication between members of the PWS CommUNITY and the association changing is based on input almost 400 of you provided in the 2019 Communications Survey.This is the ﬁ rst issue of PWSA (USA)’s Quarterly Pulse Newsletter, which replaces the Gathered View. Our readers asked for a more modern format focused on key information in areas of greatest interest to you. Please let us know how this and future issues meet your needs, and we’ll work to continually improve this publication.We hope you’re also receiving and reading the Weekly Pulse Email, and hope it is keeping you “in the know” about key PWS subjects and activities. Please send an email to Erica at efuro@pwsausa.org if you’re not yet receiving our e-newsletter but would like to. As always, thank you overall for all that you do for our community, and in particular for support you give to your association, PWSA (USA)! Steve Queior, CEO April 2020, Vol. 1PWSA Quaterly Pulse is the National Newsletter of the Prader-Willi Syndrome Association (USA)Quarterly PulseIn this issue:- Sta Changes / Retirements ....................... 2- What is FMS .................................................... 3- Grant Opportunities / Member Spotlight ....4- Upcoming Events / Webinars ...................... 5May is Prader-Willi Syndrome Awareness Month, and we need YOU to help us spread the word! Throughout the month, PWSA (USA) will be posting PWS-related information and resources in emails and on social media. We’re asking everyone in the PWSA (USA) community to share our posts and emails to help others ﬁ nd the hope and support they need and to spread awareness about the challenges of PWS. Be sure to check your email for May Awareness Month updates!Looking for another way to help? Host your own awareness-raising event! The sta at PWSA (USA) is happy to help you get started!Upcoming EventTexas Prader-Willi AssociationMay 18, 2020Cypresswood Golf Club21602 Cypresswood DriveSpring, TX 7737310th Annual Molly’s Pub Charity Golf TournamentFor more information, visit www.txpws.orgPWSA Quarterly Pulse, April 2020, Vol 1 2 Rikka Bos NamedPWSA (USA)Director ofDevelopment &CommunicationsPWSA (USA) is pleased to announce the promotion of Rikka Bos to Director of Development and Communications. Since joining PWSA (USA) in 2017, Rikka has planned and helped execute key fundraising campaigns, worked with chapter leaders around the country, and been very involved with enhancing PWSA (USA)’s communications with its sustaining supporter members and the overall PWS community. In addition to planning, coordinating, and helping to execute the organization’s fund development and communication initiatives, Rikka will collaborate with CEO Steve Queior, Board Members, and other key volunteers to further develop and deploy crucial fundraising initiatives and strategies, including corporate partnerships and donor stewardship and planned giving. Rikka’s longtime experience in fundraising and nonproﬁ t-speciﬁ c communications will serve her well as she assumes her additional responsibilities over the coming months and works to ensure PWSA (USA)’s continued success. PWSA (USA) CEO Steve Queior noted that Rikka’s being a Director marks the second such appointment, with her joining Stacy Ward, Director of Family & Medical Support and Special Projects, in the o ce’s management team.Happy Retirement!RUBY PLUMMER& DIANE SEELYIn February, we said farewell to two longtime sta members, Ruby Plummer and Diane Seely.Ruby served as the PWSA (USA) Volunteer Coordinator for ﬁ ve years, working tirelessly to recruit and support volunteer e orts in our Sarasota o ce. Her passion for the PWS community brought individuals together for the betterment of the organization and all it serves. Diane Seely served as our Parent Support Coordinator for the past ﬁ ve years, spending countless hours speaking with those who have just received a Prader-Willi syndrome diagnosis. Diane also managed our largest group of volunteers, the Parent Mentors, who bring hope and strengthen the PWS community. On behalf of everyone at PWSA (USA), we would like to congratulate Ruby on her well-deserved retirement, and we wish Diane the best of luck in her new adventure managing a bed and breakfast. We are forever grateful for their hard work, commitment, and dedication - contributions worthy of our admiration. Congrats! Welcome to Our New Sta Since our last publication, we have welcomed four new sta members to the PWSA (USA) team. Andrea Lucy came aboard in the summer of 2019 as our Membership & Engagement Coordinator, working with chapters, membership, and advocacy initiatives. Erica Furo joined the team in January 2020 as our Development Specialist, working in the areas of fund development and communications. We are thrilled to have Chris Miller as our new Administrative Services Coordinator and former board member Kristi Rickenbach as our new Parent Support Coordinator. Welcome Andrea, Erica, Chris, and Kristi to the PWSA (USA) family! Hi, my name is Victor Penta and I am the newest member on the PWSA (USA) Adults with PWS Advisory Board. I would really like to encourage more adults with Prader-Willi syndrome to join. If you would like to, send in your application to pwaab@pwsausa.org. I can’t wait to meet the new members on our advisory board in January of next year for our annual board meeting. We need more active members to help advocate for other adults with PWS, and to make the YAP Program and PWSA gala more suitable for adults. If you would like to be a good role model and advocate for your peers with PWS, joining PWSA (USA) Adults with PWS Advisory Board is a good opportunity to do just that.I am happy to share that Conor Heybach has been mentoring me to become a good member. He has been giving me great advice and ideas on how to become the best board member and role model for others with the syndrome. Here is what he had to say: “Don’t let all the hard work past members have accomplished go to waste.” May Awareness Month

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PWSA Quarterly Pulse, April 2020, Vol 1 3 PWSA Quarterly Pulse, April 2020, Vol 1 4 PWSA Quarterly Pulse, April 2020, Vol 1 5 Prader-Willi California FoundationWALKING FOR PWSSAN DIEGO4 April 2020 10:30 AM – 2:30 PM Join us for a day at the park! We will be walking a trail and then enjoying an afternoon of live music, dancing, fun games and more! Please bring your own lunch to this event. Registration can be completed online or the day of the event in person. Street Parking is available along Sixth Avenue and Balboa Drive. Our tents will be set up in the grass area between 6th Avenue & Balboa Dr.———Prader-Willi California FoundationWALKING FOR PWS:LONG BEACH3 May 2020 10:30 AM – 2:30 PM Join us for an afternoon at the park! We will be walking a trail to raise awareness for PWS. After the walk, you can enjoy live music, fun games, arts and crafts and more! You can register for the walk online or in person the day of the event. Subway sandwiches will be provided for our Long Beach walkers. Golden Grove area is located in the Northwest section of the park. Enter park on the North side of Spring Street and follow signs for PWCF. Parking is $7 cash.———PWSA of WisconsinON THE MOVE WALKATHON9 May 2020 9 AM – 12 PM Raising Awareness and funds for PWS! More information and registration coming soon!———Prader-Willi California Foundation WALKING FOR PWSSAN FRANCISCO9 May 2020 10 AM – 2:30 PMJoin us for an afternoon at the park! We will be walking a trail to raise awareness for PWS. After the walk, you can enjoy live music, fun games, arts and crafts and more! You can register for the walk online or in person the day of the event. Make sure to pack a healthy lunch for the day! Little Marina Green is located West of Yacht Harbor, at the intersection of Mason St and Yacht Rd. Free parking at Crissy Field Center. Follow signs for PWCF.PWSA of Minnesota2020 PRADER-WILLIGOLF SCRAMBLE5 Jun 202010:00 AM – 6:00 PMPlease join us for a day of fun and help us support those a ected by PWS!———John and Hunter Lens11TH ANNUAL HUNTER LENS GOLF TOURNAMENT27 Jun 20201:00 PMHunter is 21 years old and has Prader-Willi syndrome. He leads a happy, active life despite his daily challenges. He has friends, a loving family and his weight in under control. Supporting PWSA (USA), a non-proﬁ t, will open more doors for Hunter and others who live with PWS, which ultimately means a better life. Hunter deserves a better life. Please join us at The Back Nine Golf Club on this special day in honor of Hunter. Registration and payment deadline is May 31, 2020.Research Grant Opportunities at PWSA (USA)Member SpotlightThis is Khaled, he is twomonths old (as a preemie,his corrected age is onemonth). Like most babieswith Prader-Willi syndrome(PWS), he is very lazy. Khaled was in the NICU forquite some time. It took usawhile to receive Khaled’sdiagnosis and we were thinking everything was ﬁ ne and we would be released from the NICU and going home soon. When the doctor came in to give us the diagnosis, we were handed a piece of paper about PWS and he talked to us about a bunch of stu we didn’t understand. It hit us hard and we had several emotional breakdowns. We were angry at the diagnosis. When other families in the NICU asked us which baby was ours, we cried because we didn’t want to talk about it – we couldn’t accept it, we were in denial. We ﬁ nally reached out to PWSA (USA) and were Family photo with Aboubakar (dad),Sarah (mom),Ragya (auntie)and Khaled(baby with PWS)connected with Paige, our parent mentor. Within the hour, we met Paige and her son Jake, who also has PWS. They saved our lives and the PWSA community changed our lives. I can’t stress enough how much the support we received changed our lives. It gave us a way forward, and even though it is a long road ahead of us, we know we are not alone. – Sarah and Aboubakar, parents of KhaledPrader-Willi Syndrome Association (USA) is pleased to o er grant assistance for scientiﬁ c researchers with an interest in improving the lives of those with Prader-Willi syndrome (PWS). PWSA (USA) is seeking to fund projects for a maximum of $100,000 total per project for a 1 to 2-year grant support aimed at discovering and developing treatments and technologies beneﬁ ting those with Prader-Willi syndrome.The current focus of PWSA (USA) research is supporting projects that have the potential for immediate and high impact for the PWS community. Therefore, PWSA (USA) will support research-based translational grants or those showing high promise for translating basic biomedical knowledge to clinical application. The goal is to fast-track better treatment for the syndrome.At PWSA (USA) we work to integrate what we have learned about the needs of our families through our support programs — with research that we think will make an important and practical di erence in the lives of those a ected by PWS, thus the following topics will be the focus area for grants accepted and will receive priority rating for this request for application (RFA):• Alternative methods in the provision of care in PWS i.e.: Continuum of Care, telehealth projects.• Behavior and psychiatric issues i.e.; medication management, new treatment therapies.• Gastrointestinal issues i.e.; constipation, hyperphagia issues.• Respiratory issues; Sleep and airway evaluation, RSV inoculation.• E cacy of growth hormone use in PWS; adults and children• Skin issues, i.e. picking• Cardiovascular issues i.e.; Incidence and pathology of thromboemboli and cardiopulmonary failure in adults with PWS.For more information on this exciting research grant opportunity, visit PWSA (USA)’s website: https://www.pwsausa.org/research-funding-opportunities/. New Diagnosis Supportand Parent MentoringWe o er comprehensive support and education to families at time of diagnosis and provide accurate information about PWS. Our Parent Mentoring Program is all about making connections with other “veteran” parents. One of the most di cult parts of this journey is reaching out, talking and meeting other families. Each of our mentors has shared similar experiences; we too have been comforted and nourished by our Parent Mentors; we have wept together, and we have laughed together. We are committed to ensuring that newly diagnosed families have the most up-to-date research material, educational literature, counseling, nutrition, and medical information all within our Package of Hope which we have been providing to families for well over a decade. We hand select our parent mentors with each family’s speciﬁ c needs in mind, to guide and support you throughout your child’s lifetime. The compassion and caring from these very special connections can be a lifeline of HOPE.Diet and Weight Management E ective weight management is a crucial part of the care of a person with Prader-Willi syndrome. We support families to manage weight e ectively through appropriate meal planning, environmental supports and other e ective strategies. We also provide nutritional information and information about weight management to dieticians, school sta , and a wide variety of other caregivers/providers that are not familiar with the syndrome. Behavior SupportWe provide behavior support to families, school districts and residential providers, by assisting with the development of positive behavior intervention plans, review of plans and implementation of best practices. We also provide behavior support to agencies looking to support individuals within the community, such as case managers, job coaches, and sheltered worksites.Consultations and TrainingsWe o er consultations and trainings to residential providers, school personnel, and other support sta who need guidance or increased knowledge to support their client. Consultations may be provided in person, via telephone or teleconference. We also work with agencies that express an interest in serving individuals with PWS and have inquired about training and program development. Peer to Peer ConsultationsWe facilitate consultations between PWSA (USA)’s volunteer medical consultants and an individual’s medical team, emergency room physicians or specialty clinicians.Insurance/Medicaid/SSI Appeal AssistanceWe aid with appealing denials for Medicaid, insurance coverage (for example, growth hormone) and SSI/SSDI. We write appeal letters, provide supporting documentation, and help families and guardians through the application process for Medicaid and SSI.Residential Placement Support PWSA (USA) has created a Residential Care Database of agencies providing residential services to people diagnosed with PWS. We support families through their search for the most appropriate provider for their loved one. We assist with communication and conﬂ ict resolution between families and providers, and help families advocate for their loved one with PWS. We also provide consultation to providers who are interested in opening a PWS speciﬁ c program or in supporting an individual with PWS.Direct Support to Individualswith PWSWe provide counseling and supportto individuals diagnosed with PWS that reach out directly with concerns for their own health or safety.Family and Caregiver SupportWe o er emotional support and counseling to all family members or caregivers that are struggling with supporting someone diagnosed with PWS. Providing Information for Future PlanningWe o er guidance and information for the future planning of individuals with PWS to help ensure the best quality of life.Guardianship SupportWe provide information to families regarding obtaining guardianship and the process in their state. We counsel families through determining whether taking this step is appropriate for their loved one, provide supporting documentation and support them through the process.Legal SupportEncounters with law enforcement are particularly scary for individuals with PWS and their families. We educate law enforcement personnel, public defenders, district attorneys and judges and help to identify if P WS has contributed to the situation, moving the discussion from criminality to disability.Medical SupportWe do not give medical advice but help caregivers navigate their healthcare needs and to access appropriate medical specialty care. Evidence based care is discussed and support documentation may be provided for families. When families are in crisis or individuals are ill, we help to ﬁ nd urgently needed care to maintain safety and prevent escalations or worseningof the condition. FAMILY AND MEDICAL SUPPORT SERVICESPWSA (USA)’s Family and Medical Support team provides support to individuals diagnosed with Prader-Willi syndrome, their families and providers; educates medical providers, education professionals and professional caregivers about PWS and advocates for the comprehensive needs of the entire PWS community.WHAT WE DO:Exciting Chapter Events Around the Country COVID-19 UpdatePWSA (USA) is aware that the threat of illness is always a potentialdanger to those with PWS, their families and community. We adviseour families to be extra vigilant in their e orts to prevent the spreadof viral illness especially at this time when COVID-19 is likely to bepresent in their communities at some point. We urge our communityto only go to trusted sites and their medical professionals for informationon this particularly infectious virus. Below is the link to the Centers forDisease Control (CDC) website where you can get the facts and answersto many of your questions.Remember to have your Medical Alert Booklet with you when seeking medical care in any setting. If you need an updated copy download it here: https://bit.ly/3b5lwwb It might also be helpful to have a copy of the Medical Overview of PWS pamphlet for a quick reference for health care providers: https://bit.ly/2QrPXEV

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Prader-Willi Quarterly Pulse April 2020

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