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Prader-Willi Quarterly Pulse February 2021

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Quarterly Pulse February 2021 Vol 1 In this issue PWSA USA new CEO announcement brand refresh and website launch 2 24 Hour Emergency Support Hotline 3 PWSA USA partners with Running for Research Operation Holiday Cheer 4 2020 Hope for the Holidays Concert review 5 Autism Brain Network Support Impact 6 Staff Listing 7 Thank you Board Listing 8 Save the Date Hot Stove Dinner 9 Hope s on the Horizon 10 SAVE THE DATE 7th Annual Hot Stove Dinner with Clint Hurdle 2020 Year in Review At the close of midnight December 31st we said our enthusiastic goodbyes to 2020 thankful to be done with a year more challenging than many of us had lived through before My family like yours experienced fear of an unknown virus the isolation and loneliness of quarantine the pain of missed celebrations and the seeming end of daily life as we knew it And yet 2020 seems to have given as much as it took As a community we drew closer together leaning on one another for support and encouragement We came together to find ways to access services to share resources to connect in meaningful ways even when forced to remain physically distanced As an organization PWSA USA responded to the pandemic by launching a 24 hour phone hotline to support our community more completely We introduced improved technology that will enable us to deliver services more efficiently we enhanced the content and design of our programs including a new virtual format for our National Convention to ensure greater access and relevance for all families and worked harder than ever to achieve greater collaboration and stronger relationships with community partners As we begin our shared journey into 2021 PWSA USA s commitment to everyone in the PWS community remains steadfast Over the next year we will introduce new health and wellness initiatives broaden our emphasis on education and refocus our research efforts on practical nearer term applied research In 2020 we learned the true strength and resilience of the PWS community In 2021 and beyond we will build on that unshakeable foundation confident in the courage of community I look forward to meeting and interacting with you and your family in the year ahead and I am always interested in your ideas and feedback for our organization If you would like to contact me at any time please feel free to email me at privard pwsausa org With gratitude March 20 2021 See page 9 Paige Rivard CEO

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Prader Willi Syndrome Association USA Welcomed Paige Rivard as Chief Executive Officer Following the retirement of former PWSA USA CEO Steve Queior in April of 2020 the organization welcomed Paige Rivard to the position in an interim capacity She was formally appointed to the role in August Paige has been an active member in the PWS community for many years In addition to her time as a member of the PWSA USA board of directors one year as Vice Chair she served PWS families as a parent mentor Paige also founded a nonprofit organization in her home state of Nebraska to serve families affected by the syndrome Rivard earned an Executive MBA in Healthcare Management from Creighton University and a BS in Business from Kansas State University She has a deep management background having served as the Director of Relationship Management at TSYS Merchant Solutions where she directed a team of account managers whose portfolio included well known clients such as GAP L L Bean and Neiman Marcus She is active in her local community serving as a board member for Munroe Meyer Institute on the Quality and Patient Safety Leadership team at Children s Hospital and serves on the Superintendent s Advisory Board for Special Education for Omaha Public Schools I am honored and excited to serve as CEO for PWSA USA As a mother whose son has two rare genetic conditions I understand how important the organization is to our community and the families we serve said Rivard Paige and her husband Matt live in Omaha Nebraska and have two children daughter Jordan 21 and son Jake 10 who has Prader Willi syndrome and Neurofibromatosis Brand Refresh and Website Launch In a year wherein much of our daily lives went virtual PWSA USA launched a new and improved website www pwsausa org to provide the Prader Willi syndrome community with yet another information tool In addition to enhanced online communications frequent more relevant blogs and an online newsletter library the site offers parents and caregivers critical resources such as searchable medical and residential care provider directories and an A to Z Medical Directory A downloadable Medical Alert Booklet and gastrointestinal chart are also easily accessible even from a mobile phone Visitors to the site can also find information about local chapters volunteer opportunities and much more PWSA USA also rolled out a vibrant new logo in 2020 The new logo is modern colorful and more representative of the diverse dynamic community the organization serves Says PWSA USA CEO Paige Rivard This logo is a visual 2 interpretation of the inspiration hope and transformation our organization brings to PWS families We celebrate that each family s experience with PWS is unique but like the colorful wings of the butterfly in our new logo we are all connected to each other And that connection makes us stronger

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PWSA USA Launches 24 Hour Emergency Support Hotline The past year was challenging for everyone and this was especially true for families affected by Prader Willi syndrome In addition to the struggles the community faces on any given day the global pandemic brought heightened health and safety concerns isolation and loneliness and disrupted routines and schedules PWSA USA experienced a significant increase in requests for help as families learned to navigate a new normal and in response introduced a 24 hour Family Support service Initially launched as a trial program it quickly became evident the need for 24 hour support was critical and would be ongoing Since its launch families have praised having round the clock emergency access to information and support for urgent medical and behavior management situations The 24 hour emergency support services are provided by PWSA USA s knowledgeable and friendly staff and are available to the community by calling 800 926 4797 Questions about the program can be directed to info pwsausa org This program is made possible by generous support from the Willett Family Fund It is so wonderful to talk to a person that speaks our language at a time we need it most Elana It was very comforting to have someone to call and receive support from I was very happy to have someone to call on behalf of a mom that needed help I hope you can keep the program going June President Texas Prader Willi Association The woman I spoke with really listened to my concerns and her reassurance was very relieving My lawyer was able to provide the technical assistance I need but the support line helped me work through my issues over a Holiday weekend I was so appreciative to know that there was someone with experience with PWS to help me Allison 3

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PWSA USA Partners with Running for Research Last year PWSA USA s partnered with Running for Research a group dedicated to raising funds for the Prader Willi Syndrome Research Fund at the University of Florida and Dr Jennifer Miller s work to identify effective treatments for PWS Despite the many challenges presented by the COVID 19 pandemic including the cancellation of in person races the collaboration helped the Running for Research group raise more than 125 000 far exceeding their original fundraising goal of 40 000 Funds raised helped fund two studies Medication to help reduce hair pulling and skin picking and probiotic use in infancy and the progression of PWS Plans are being made now for the next running season Donation and sponsorship information will be published as it becomes available Check out our video from the 2021 RFR https bit ly 3aL3np9 EVENT SPONSORS PWSA USA Brings Holiday Cheer to Families Across the Country Thanks to an anonymous donor s very generous gift PWSA USA was able to bring holiday cheer to a select number of families in need this past holiday season Each of the 38 families that applied received gift cards in the amount of 200 to be used to help ease the financial stresses of the holidays Oh my goodness I can NOT thank you enough This just made my day Actually my whole week Thank you thank you thank you Oh THANK YOU so very much This is such a blessing and I can t tell you how much I appreciate it It is such a relief to know I can buy my son a few gifts for Christmas this year Thank you THANK YOU What wonderful news My eyes are filled with tears of gratitude I will write my thank you letter and get it in the mail before the end of the week Thank you Thank you Thank you God Bless you and the donor who made this possible 4

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Our First Ever Holiday Concert On December 13 2020 PWSA USA presented its first ever benefit concert Hope for the Holidays The virtual event premiered on YouTube and Facebook and helped raise over 25 000 to support the organization s programs and services Headliners included CMA nominee Ingrid Andress and upcoming country music stars Sarah Marince Lauren Marie Mertens and Melody Guy Renowned stadium announcer Alan Roach served Ingrid Andress Sarah Marince as emcee Feedback from the community was positive with many families commenting the festive hour brought a much needed break during what proved to be an unusual holiday season Plans are being considered now to make the event an annual affair Missed the concert this year Watch it here https youtu be HOA0tNBl25o Lauren Marie Mertens Melody Guy PWSA USA thanks title sponsor Soleno Therapeutics and other event sponsors Levo Therapeutics and Harmony Biosciences Special thanks also to the Hurdle family for helping make this year s event possible TITLE SPONSOR EVENT SPONSORS 5

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PWSA USA Partners with Autism Brain Network Prader Willi Syndrome Association USA has partnered with Autism Brain Network ABN to help facilitate the collection of postmortem brain tissue from individuals with PWS ABN collects processes stores and then distributes collected donations as requested to qualified researchers worldwide Postmortem brain tissue is an invaluable resource for advancing our knowledge of and identifying treatment options that can significantly improve the quality of life of individuals with PWS and their families said Paige Rivard CEO of PWSA USA PWSA USA s partnership with Autism Brain Network is a way to honor the memories of our loved ones while providing hope for a brighter future for our community Autism BrainNet accepts postmortem brain donation from individuals of any age who have a diagnosis of autism or a genetic diagnosis such as Prader Willi syndrome Brain tissue donation is made as simple as possible for donor families and ABN provides compassionate support throughout the process When the death of a loved one is near or has occurred families call ABN s 24 hour 7 day a week hotline to begin the donation process 877 333 0999 ABN then works with families and medical providers to obtain consent and to coordinate the actual donation A follow up meeting is scheduled for ABN to learn more about the donor and to obtain medical behavioral and family information There is no cost to families for the donation process and brain tissue donation will not interfere with funeral or memorial service plans Preregistration is not required for donation however families are encouraged to download The Intent to Donate Postmortem Brain Tissue information sheet and the Autism BrainNet Brain Donor Card available on ABN s website To learn more about postmortem brain tissue donation please contact Paige Rivard at 800 926 4797 or visit the Autism BrainNet website at www AutismBrainNet org 2020 PWSA USA Support Impact 1261 HOURS OF SERVICE FOR THE FAMILY SUPPORT PROGRAM MEMBERS OF OUR ONLINE SUPPORT GROUPS Nearly 250 medical support calls answered 150 Families received new diagnosis support 6 2108

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STAFF LISTING Paige Rivard MBA Chief Executive Officer privard pwsausa org Melanie McDonald Director of Development mmcdonald pwsausa org Erica Furo Development Specialist efuro pwsausa org Stacy Ward MS Director of Family Support sward pwsausa org Sarah Kasaby Communications Specialist skasaby pwsausa org Christine Miller Lynn Garrick RN BSN cmiller pwsausa org lgarrick pwsausa org Administrative Services Coordinator Jackie Mallow Convention Coordinator jmallow pwsausa org Kristi Rickenbach Kristen Starkey krickenbach pwsausa org kstarkey pwsausa org Parent Support Counselor Accounting Clerk Medical Research Coordinator Cheryl Plant Administrative Assistant cplant pwsausa org Kim Tula MS CSW Family Support Counselor ktula pwsausa org 800 926 4797 www pwsausa org 7

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PWSA USA is thankful for its many dedicated volunteers incredible individuals who devote their time and talent to helping fulfill our mission From our board of directors to our committee members to our advisory board members we appreciate each and every one of you Thank you BOARD OF DIRECTORS MICHELLE TORBERT CHAIR JULIE DOHERTY SECRETARY PAM ZAMBROTTA TREASURER CRYSTAL BOSER MITCH COHEN JEFF COVINGTON DAN DRISCOLL M D PH D PETE GIRARD TIM HEARN JIM KANE ROB LUTZ MATT MCCLEERY TAMMIE PENTA MARGUERITE RUPNOW DENISE SERVAIS JOAN GARDNER 8

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Save the Date March 20 2021 A Fundraiser to Benefit PWSA USA 7th Annual Hot Stove Dinner with Clint Hurdle Join Us on the Island or Online Held this year at a gorgeous new location the Key Royale Club the 2021 Hot Stove Dinner will be an exciting evening of friends and fun on Anna Maria Island Guests will enjoy a casual cocktail hour as they mix and mingle while jamming along with the Trinidudes a steel drum band beloved for their cool island sound Then it is on to dinner desserts and even more fun A variety of activities including a silent auction and putting contest will provide endless entertainment and opportunities to help us raise much needed support for families affected by Prader Willi syndrome The Gem of Anna Maria Island Stay tuned for ticket prices hotel reservation information and more This is a family friendly event and children are always welcome Sponsorships are available by contacting PWSA USA at events pwsausa org or by calling 800 926 4797 Proceeds from the event benefit Prader Willi Syndrome Association USA to assist individuals and families affected by Prader Willi syndrome 9

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SAVE THE DATE June 22 26 2021 VIRTUAL CONVENTION Professional Providers Conference June 22nd Educational Social Services Vocational and Residential professional providers come together to discuss identified and supported best practice and standard of care approaches as well as to provide a critical in person solution orientated exchange of ideas for specific concerns that can be addressed by experts in the field Note Professional Care Service Providers only Time 11 00 AM EST to 5 40 PM EST Cost 25 includes General Conference Registration Medical Scientific Conference June 23rd 24th During this two day event Scientists Researchers and Medical professionals from different disciplines share ideas and report on progress helping to meet the ever present goal to support research that will identify effective treatment and improve the quality of life for individuals diagnosed with PWS Time 11 00 AM EST to 5 40 PM EST Cost 150 includes General Conference Registration Note about CMEs This activity has been planned and implemented in accordance with the accreditation requirements and policies of the Accreditation Council for Continuing Medical Education ACCME through the joint providership of Western Michigan University Homer Stryker M D School of Medicine and Prader Willi Syndrome Association Western Michigan University Homer Stryker M D School of Medicine is accredited by the ACCME to provide continuing medical education for physicians All medical scientific and health care professionals are welcome to attend Medical students and others may register as an observer at no cost General Conference June 25th 26th This two day event attracts parents grandparents caregivers and professionals The attendees are skillfully guided through a choice of multiple learning tracks covering an array of topics that can be tailored to their individual preferences It is a time to build relationships with other families attend counseling sessions and support groups meet with top specialists and authorities on PWS and just have fun Experts in the field provide attendees with up to date information and resources for addressing the very complex needs of supporting and caring for an individual diagnosed with PWS Time 11 00 AM EST to 5 15 PM EST Cost Free Prader Willi Syndrome Association USA Sarasota FL 800 926 4797 convention pwsausa org