Prader-Willi Quarterly Pulse October 2020
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October 2020 Vol 3 Quarterly Pulse Fall 2020 Turning a New Leaf at PWSA USA It seems just yesterday I was introducing myself to the Prader Willi Syndrome community as Chief Executive Officer of PWSA USA but here we are well into the fall season and looking ahead to the holidays and then a new year How exciting Though the past year has been incredibly challenging for everyone I am both humbled and inspired to see how much our organization has accomplished with your support Improved technology to help us stay connected and engaged with the PWS community enhanced program design and delivery and greater collaboration and stronger relationships with community partners than ever before And still there is so much more good to come In my time at PWSA USA I have already seen that our staff and volunteers share a sense of responsibility to our community that extends far beyond that of a typical job They like me understand we are more than a rare disorder community We are a family A family that faces challenges head on and comes back stronger A family that celebrates the good times and rallies in the tough times A family that cherishes the memories of where it has been and bravely looks ahead to what is to come We are all so thankful for you and your family and the support you continue to show us In that spirit of gratitude I would like to take a moment to thank everyone who contributed to the recent Family Support SchoolSuccess campaign Thanks to the generosity of the PWS community we met our campaign goal and are now able to launch our exciting new School Success program visit page 2 to learn more As 2021 draws ever closer we at PWSA USA are more hopeful than ever for the PWS community With each passing day we grow stronger proving once again that together we are Saving and Transforming Lives Paige In this issue Smart Pens A Game Changer 2 SchoolSuccess Superheroes 2 PWSA USA Public Policy Updates 3 A World Without Bullying 4 Telehealth Needs Assessment 5 COVID 19 and Your Student s School Success 5 Running For Research Back Cover Save The Date Convention Back Cover Running For Research PWSA USA is happy to announce its partnership with Running for Research a diverse group of runners 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 children and adults with Prader Willi syndrome PWS Since its founding in 2018 the group has nearly tripled in the number of runners and now includes runners of all ages and abilities from across the world running local and virtual races in support of the cause The group s founder Kelly Guillou says Running for Research has entered into a partnership with Prader Willi Syndrome Association USA a national nonprofit organization dedicated to serving the PWS community With the support of PWSA USA RFR will be able to expand its reach and raise more money to support PWS research at the University of Florida And because PWSA USA is a recognized 501 c 3 RFR will now be able to offer sponsorships to corporations Any sponsorship money received will be split evenly between RFR and PWSA In addition PWSA USA will help raise awareness about RFR by advertising it in its weekly and quarterly newsletters as well as on its social media accounts Other than the split of sponsorship revenue all money raised by RFR will continue to be for the SOLE benefit of the UF PWS Research Fund The group s fundraising goal for the 2021 Walt Disney World Marathon January 6 10 2021 is 40 000 Any Continued on Back Cover PWSA Quaterly Pulse is the National Newsletter of the Prader Willi Syndrome Association USA
Smart Pens A Game Changer for Students with PWS from Guest Contributor Spencer Ginyard a Young Man Who Has Prader Willi Syndrome In the earlier years of my educational journey I struggled in school I was falling behind in my classes asked a lot of questions missed taking all of my notes down always needing one on one assistance and was slowing down the class due to the teacher having to repeat what he had said so I could understand By the end of fifth grade I was told that I needed to be in a school that could accommodate my learning disability because the elementary school that I attended no longer was able to give me resources so I could be a successful student At this time I was behind in my reading and math skills and no longer at grade level At that time I did not have any technology that could help me to ease my stress and anxiety levels I could not focus in school and was making average grades at a C level or below Due to my struggles I had to attend Valencia Elementary School which had a Special Education Program for sixth grade Throughout my Junior High and High School years I had a combination of Special Ed and mainstream classes During my Junior College years I used and struggled with tape recorders note taking techniques and aides helping to take notes during classes My early breakthrough was when I got a real student note taker which led to the introduction of the smart pen While attending Cal State University of San Bernardino the SSD Services to Students with Disabilities provided me a smart pen smart pen kit with ink and a smart pen notebook When I started using the smart pen I was able to record my lectures and take notes at the same time Also I was able to create my own study guides and highlight important information The smart pen allowed me to pinpoint important material needed for my tests in my classes As a result of using the smart pen my study time was reduced information in the lectures was never missed my stress and anxiety levels were reduced I became more relaxed and did not have to rely on writing everything the professor was saying and I can just write the important things down By having my smart pen I was able to comprehend the material better was able to keep up with the rest of the class and received all A s and B s If I had the smart pen earlier in my education I would not have gone through the obstacles that I faced throughout my early school years In my opinion the smart pen is an unbelievably valuable resource for students with PWS Learn more about available Smart Pens https amzn to 2G8IvMG PWSA Quarterly Pulse October 2020 Vol 3 SchoolSuccess Superheroes Save the Day The 2020 Family Support Campaign a Success Thanks to everyone who answered the call and became a SchoolSuccess superhero Because of you parents will be empowered with information resources and representation and education professionals will have access to critical information and support such as grade specific toolkits and in person and virtual training sessions Your continued leadership in supporting our loved ones with PWS is showing others that the lives of kids and adults need not be defined by their diagnosis Thank You for Your Gift Special Thanks to Our Chapter SchoolSuccess SuperHeroes PWS AZ 1 000 PWS NJ 1 000 PWS MN 5 000 PWS NE 20 000 Your gift to PWSA USA makes a real meaningful difference in the lives of those affected by Prader Willi syndrome Make a donation today at www pwsausa org Thank you 2
PWSA USA Public Policy Update Effective advocacy is essential to ensuring the health safety and enhanced quality of life for those affected by Prader Willi syndrome PWS As such PWSA USA is committed to making a lasting and sustainable impact for those affected by PWS through our public policy and federal advocacy initiatives Winter 2020 From February 25 28 rare disease advocates met with Members of Congress during a weeklong Capitol Hill event Stacy Ward Director of Family Support joined over 800 advocates on Capitol Hill to represent the PWS community by leading discussions and informing policymakers about PWS and legislation that affects those with PWS Around the world rare disease advocates joined in on social media to share messages of solidarity throughout the month of February The hashtag RareDiseaseDay trended in a record 13 countries across 5 continents In the USA the hashtag GrowingUpRare trended in the PWS community with thousands of PWS advocates sharing their stories of what it is like to grow up with a rare disease Spring 2020 During the month of May PWS advocates were encouraged to ShareYourRare on social media to commemorate PWS Awareness Month In an outpouring of solidarity and support people around the world who are affected by PWS joined together to share their stories By telling their stories PWS advocates represented our collective strength and created a groundswell call to action This groundswell of support led to an outstanding 541 PWS advocates generating 3 748 tweets emails phone calls and letters to Members of Congress to educate them about PWS and urge them to support policies that make a lasting and sustainable impact for those affected by PWS Summer 2020 Stacy Ward Director of Family Support participated in Rare Across America this summer Stacy met with Representatives and Senators and their staffers virtually and in person Thanks to these efforts there are 8 new members of the Rare Disease Congressional Caucus totaling 179 members and 10 new cosponsors of the Creating Hope Reauthorization Act In August PWSA USA hosted Five in Fifteen Federal Public Policy mini webinar series During these 15 minute webinars PWS advocates learned about the various ways they can advocate for federal policies that will make a lasting and sustainable impact for those affected by PWS The webinars are available on our YouTube channel Individuals diagnosed with PWS require life long supports and services much like those with Microtia Atresia That is why PWSA USA demonstrated our solidarity with Ear Community by writing a statement of support for the passage of Ally s Act to ensure that private insurance companies provide coverage for osseointegrated hearing devices for individuals affected by Microtia Atresia a rare condition that results in the absence or underdevelopment of the ear canal and ear structures Fall 2020 and Beyond On September 17 Andrea Lucy Chapter and Member Coordinator attended the Rally for Medical Research Capitol Hill Day event This virtual event had over 300 national organizations who came together to call on our nation s policymakers to make funding for National Institutes of Health NIH a national priority and raise awareness about the importance of continued investment in medical research PWSA USA began working with PWS advocates in Arizona California and Texas to initiate the process for getting PWS recognized as a qualifying diagnosis for developmental disability services Currently PWS is only listed as a condition automatically eligible for supports and services regardless of IQ in 14 states A recognized service eligibility diagnosis does not guarantee approval however it does reduce the number of steps and eliminate the initial denial that individuals with PWS often receive While getting PWS recognized as a qualifying diagnosis for developmental disability services can take time initiating the process is something we would like to help every state begin this fall We hope to accomplish this through a series of educational webinars to help PWS advocates understand the process Each webinar will be facilitated by PWSA USA staff and include dialogue between PWS advocates leaders experts and guest speakers Your endorsement shows a genuine passion for not only wanting to help children and adults in varying communities no matter what their challenges are but for also wanting to be supportive of other organizations in their advocacy efforts said Melissa Tumblin Founder Executive Director of Ear Community PWSA Quarterly Pulse October 2020 Vol 3 3
Together We Can Create a World Without Bullying October is National Bullying Prevention Month Bully By Spencer Ginyard elementary school 1st grade recess just minding his own business he is just hanging out with his friends he could not even say the word girl correctly because of his stutter and r sound developing people started to make fun of him him and his friends made up a game called handball baseball it was our treat at recess he was extremely good at it until he started to have trouble one day he had a bully come towards him a stranger started to make fun of his stutter problem he would always have trouble with his r sounds he just needed a quiet place to talk to someone and someone to listen it was his routine from that point on he was so humiliated that he crawled into his shell like a turtle would do when it is startled he wanted the torture to stop but it was non stop like alarm clock set at a certain time when he woke up he felt really good god gave him a positive attitude and showed him the light he went to school that day but still had trouble with being bullied he felt that god is always with him one day when he got home he prayed about it the next day he used his room as a war room like the movie called War Room the next day the bullying was not a burden anymore he finally had peace and quiet at school Tips To Combat Bullying from Guest Contributor Spencer Ginyard a Young Man Who Has Prader Willi Syndrome Build up your self esteem Let family members or whoever is around you know when the bullying is happening Reach out for help and guidance Always be positive have positive thoughts and do things that will put you in a positive state of mind Choose friends that have a positive influence for you Ask god for strength power and guidance Pray about it Always tell yourself when you are being bullied that there is something better for you in your future Always have love for yourself say that I am loved and I am meant to be on this earth The Quarterly Pulse is going virtual Beginning in 2021 our newsletter will be moving online only to lessen our impact on the environment and to be better stewards of our resources Make sure your email address is up to date by sending your information to news pwsausa org PWSA Quarterly Pulse October 2020 Vol 3 4
PWSA USA and the Foundation for Prader Willi Research Partner for Telehealth Needs Assessment Prader Willi Syndrome Association USA PWSA USA and the Foundation for Prader Willi Research FPWR have partnered to conduct a study to measure interest in telehealth as a way of increasing access to care from Prader Willi syndrome specialists In addition the project aims to better understand the demographic makeup of the Prader Willi syndrome PWS parent and caregiver population to measure stress associated with traveling for healthcare and to measure the well being of children with PWS The launch of this study is really exciting said Paige Rivard Chief Executive Officer at PWSA USA Not only is it an incredible opportunity to assess the dynamic needs of the PWS community but it is also a chance for PWSA USA to partner with FPWR and Dr Jennifer Miller a key PWS clinician to better serve families affected by PWS Through this study we will gain a deeper understanding of who our PWS community is and how technology particularly telehealth might increase access to care and help reduce the financial burden of travel to specialists Telemedicine offers new opportunities to improve the health of individuals with PWS wherever they live explained Theresa V Strong Ph D Director of Research Programs at FPWR We re excited to be partnering with PWSA USA and Dr Miller to explore how telemedicine can be used in the PWS community To be eligible for the study participants must be 18 years of age or older and be the parent or caregiver of a child with a confirmed diagnosis of PWS Study participants will be asked to complete a secure online survey and two questionnaires including a modified version of Generalized Anxiety Disorder 7 item scale GAD 7 questionnaire Enrollment for the study is now open Note At this time the survey and research is limited to families residing in the United States International families interested in participating in future studies are encouraged to contact Paige Rivard at privard pwsausa org Anyone interested in participating in the Telehealth Needs Assessment study is encouraged to visit https bit ly 3hI36VK to learn more To download an informational flyer go to https bit ly 3hI36VK COVID 19 and Your Student s School Success In April of this year Diane Willcutts of Education Advocacy LLC partnered with Pete and Pam Wright of Wrightslaw to conduct a nationwide survey to better understand the impact of COVID 19 and related school building closures on special education Over 3 000 respondents from 49 states and the District of Columbia participated Their answers highlighted the need for individualized education clearly demonstrating there is not a one size fitsall approach to educating students with disabilities when school buildings were closed Interestingly most parents felt school districts were doing the best they could given the current situation though only 20 responded that distance learning was going well Even before COVID 19 parents and school districts frequently disagreed about goals behavior interventions support services and more Disagreeing with the school district is okay and to be expected Your child s education is an emotional topic and while schools are making decisions based on the short term you are dealing with the long term lifelong effects of those decisions This does not make you right and them wrong or vice versa it is simply PWSA Quarterly Pulse October 2020 Vol 3 different perspectives The COVID 19 pandemic has forced school districts to adapt to changing safety regulations by offering in person and virtual and in some cases a hybrid of both formats classes One thing the pandemic did not change however are the responsibilities outlined in the Individuals with Disabilities Education Act If your family needs support during this uncertain time PWSA USA s Family Support team is here to advocate on your behalf New School Success Toolkits PWSA USA has created six toolkits to help parents better understand their rights special education law and become better advocates for their students Toolkits can be found at www pwsausa org 5
Running For Research continued from page 1 donations or sponsorships received will help fund two studies Medication to help reduce hair pulling and skin picking and probiotic use in infancy and the progression of PWS All donations are welcome and appreciated and gifts at the 1 000 level and above will be recognized in pre and post race marketing as well as on race t shirts worn by the Running for Research team To learn how you can support the Running for Research team please contact Kelly Guillou at kelly guillou biz or Paige Rivard at privard pwsausa org Members of Running for Research come from a variety of backgrounds but are united in their determination to help find treatments for the most debilitating aspects of PWS With your support we can create a future in which children with PWS is better happier and healthier than ever before For more information about the Walt Disney World Marathon Weekend please visit https bit ly 32yrPXI To order a T shirt please visit https bit ly 3cczChj Running For Research Sponsors 2021 PWSA USA NATIONAL CONVENTION Lake Buena Vista Palace Orlando Florida June 23 26 2021
