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Prader-Willi Quarterly Pulse July 2020

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July 2020 Vol 2 Quarterly Pulse 2020 The Year of Connection CEO UPDATE Being quarantined at home with our families has posed challenges for many of us and yet the past few months have also provided a unique opportunity to reconnect or connect more deeply with our loved ones COVID 19 has also reminded us of the importance of family ties and friendship and of the hope and support we get from our communities The PWSA USA community is no exception Though we have been forced to cancel fundraisers and social events to protect our loved ones the PWS community continues to prove distance of any measure whether 6 feet or 6 000 miles cannot stop us from connecting to each other We are bonded by our shared experiences To those who might not know me my name is Paige Rivard I have been active in the PWS community since the birth of my son Jake 10 years ago I joined the PWSA USA Board of Directors in 2018 becoming Vice Chair in 2019 and as of April of this year I have joined the PWSA USA staff as Interim CEO Over the past several weeks I have had the privilege of witnessing PWSA USA staff and volunteers work harder than ever to connect the PWS community to expert information and resources particularly those addressing COVID 19 s unique affect physical emotional and social on our loved ones Time and again I have seen our staff and volunteers provide help and support through our Family Medical Support Program hope and virtual hugs via our online Peer Support Groups Whether formally or informally PWSA USA s impact is real the connection is genuine I invite you to connect with me any time by dropping me an email at privard pwsausa org I would love to hear how PWSA USA has connected with your family and how we can do even better in the future Paige In this issue Slate of Candidates 2 Grief Support Program 3 Exciting Chapter Events 3 Member Spotlight 4 General Membership Meeting Minutes 4 OFFICIAL BALLOT 2020 2023 Board 5 Save The Date Convention Back Cover Stronger Together Building Social Connection Beyond COVID 19 By Emily Felt Our relationships keep us feeling happy supported and engaged and the importance of social connection in our lives has never been as clear as it is now during COVID 19 In a survey of the impact of the social distancing policies enacted to address the coronavirus on mental health it s no surprise that people reported stress financial strain and loneliness But there s also a positive finding from this early research The study carried out by researchers at the University of Georgia suggests that relationships that exhibit true understanding and caring between partners can act as a buffer to stress and relationship conflict Psychologists have spent decades studying the relationship between social connection and health and well being Research shows that having supportive relationships and high quality connections is related to better physical health and life satisfaction In contrast loneliness can be as harmful to health as smoking or obesity In fact social connection is so important that we should be intentional about maintaining it during this current time of challenge This is especially true for PWS families For us supportive Continued on Back Cover PWSA Quaterly Pulse is the National Newsletter of the Prader Willi Syndrome Association USA

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Peter Girard Peter Girard has been married to his wonderful wife Gayle for 38 years They had two children twins born in 1987 Amanda and Jeremy Jeremy was diagnosed with Prader Willi syndrome at the age of 9 Peter has owned several successful businesses In 1982 he started his first computer company and later sold it in 1990 In August of 1990 Peter became an Air Traffic Control Specialist with the Federal Government from which he retired in 2012 During this time he also operated a computer consulting business that he still operates today In 2008 along with family members Peter purchased and renovated a motel in Townsend Tennessee and is currently the managing partner Peter has served on the Board of Directors of the Lake Conway Woods Homeowners Association as Vice President and is currently serving as Treasurer on the Board of Directors of Mountain Miatas of East Tennessee While on the Board of Mountain Miatas Pete has been instrumental in focusing the club on charitable giving Tammie Penta Tammie Penta is a retired police sergeant with over 27 years experience She is a recognized expert in elder and child abuse investigations having spent 10 years conducting criminal investigations from family crimes to organized crime Additionally she spent four years as a field training supervisor at the Southern Arizona Law Enforcement Training Academy where she developed training to help officers address crisis situations with people with developmental or mental health issues Specific to this training was how to address the issues with several adult Prader Willi syndrome homes located in Southern Arizona During her three years on the PWSA USA board Tammie has been the committee chair for the Family and Medical Support and Leadership committees She has also served on the Executive Chapter Relations and Advocacy committees Additionally Tammie has sat on the Arizona chapter for Prader Willi syndrome since 1996 and was certified through the WSEAT Wyatt Special Education Advocacy Training in 2013 Tammie and her husband Phil have been married for 27 years They have three children Victor who was diagnosed with PWS at the age of two Nick and Raquel PWSA Quarterly Pulse July 2020 Vol 2 Jeffrey A Covington Jeff Covington lives in Albany New York with his wife Lisa and their son Grant His adult daughter Alaina lives in Boston Massachusetts Jeff holds a Master s Degree in Public Health and a Bachelors of Arts Degree in American History both from the University at Albany Jeff has worked as a professional provider since 1994 beginning as a camp counselor at OPWDD s Camp Wilton outside Saratoga Springs New York From 2004 to 2014 Jeff served as the Director of Residential Services for Catholic Charities Disabilities Services CCDS in Albany CCDS specialized in residential services to individuals with Prader Willi syndrome During that same time Jeff served as the Residential Supports Advisor for the PraderWilli Alliance of New York PWANY Inc and as a member and eventual co chair of the PWSA USA Professional Provider Advisory Board In 2008 Jeff was part of a contingent of American professional PWS providers who traveled to Herne Germany to lead a delegation of international providers in creating a best practices manual to support of individuals with PWS Additionally Jeff has been a frequent presenter at both state and national conferences for PWANY Inc and PWSA USA Currently Jeff works as the Director of State Implementation for Therap Services Therap Services is an Electronic Health Record specializing in meeting the needs of agencies serving people with developmental disabilities and is used in all fifty states Mitch Cohen Mitch and his wife Francine have a daughter Ali who has PraderWilli syndrome Mitch currently serves on several boards for charitable organizations and has been honored for his charitable giving and fundraising efforts Professionally Mitch Cohen leads Ernst Young LLP s Global Life Sciences Tax practice Professionally Mitch leads Ernst Young LLP s Global Life Sciences Tax practice In this capacity he has worked with many of the firm s largest pharmaceutical biotechnology and medical device clients Mitch also currently serves as the Global Coordinating Partner for all service lines on a Fortune 100 biopharmaceutical company Mitch received a BS in Accounting from Syracuse University and a JD from The State University of New York s University of Buffalo Law School 2

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PWSA USA Grief Support Program Grief can be painful and isolating but you do not have to navigate the grieving process alone There is help and support within the PWS community Grief can occur with any type of loss Grieving is a necessary step in the healing process Grieving the loss of a loved one s life is what most people think of when we talk about grief That makes sense as the literal definition of grief is deep sorrow especially that caused by someone s death However anticipatory grief and disenfranchised grief are two other very real forms of grief someone can experience Anticipatory grief is grief that occurs when a loved one is severely ill or is in the process of dying This type of grief is common when witnessing a change or deterioration of a loved one s health and we begin to mourn that loss Disenfranchised grief is grief experienced when a loss occurs that is not openly acknowledged publicly mourned or socially supported Any loss that someone experiences that is not commonly experienced by others can lead to JULY 2020 disenfranchised grief Disenfranchised grief might be experienced when Parents receive the information that their child has been diagnosed with Prader Willi syndrome Individuals with PWS realize some of the limitations they face due to the syndrome such as never being able to live independently or obtain a driver s license A child or adult with PWS moves out of the family home into a group home or supported living situation PWSA USA offers grief support services to individuals diagnosed with Prader Willi syndrome parents family members and caregivers PWSA USA s Grief Support program provides both individual and group support to those dealing with the loss of a loved one and as well as grief related to losses not involving death particularly disenfranchised grief The program consists of activities to aid the healing process and resources such as books Training for professional providers is also available Those needing support can access it via telephone Skype Zoom PWSA USA s Facebook grief support group or in person For more information please contact Kim Tula at ktula pwsausa org Exciting Chapter Events Around the Country July 4 INDEPENDENCE DAY AUGUST 2020 August 2 3 PWSA OF OREGON AND WASHINGTON FAMILY CAMP Anderson Lodge 18206 NE 399th St Amboy WA 98601 Come sit around the campfire and visit with other people who share our unique joys and challenges August 8 9 PWSA OF OREGON AND WASHINGTON PICNIC Lunch and afternoon snacks provided join us for a healthy and relaxing day of walking hiking boating and other outdoor activities SEPTEMBER 2020 September 12 11TH ANNUAL HUNTER LENS GOLF TOURNAMENT The Back Nine Golf Club 17 Heritage Way Lakeville MA 02347 Registration and payment deadline September 1 2020 Golfer 150 Includes golf prizes and awards celebration dinner Golfer under age of 16 80 Includes golf Awards Celebration Only 60 Includes dinner OCTOBER 2020 October 17 2ND ANNUAL SPARKLE AND SHINE GALA Red Circle Inn and Bistro N44 W33013 Watertown Plank Road Nashotah WI 53058 More information coming soon September 27 PWSA OF WI S ANNUAL GOLF BENEFIT The Oaks Golf Course 4740 Pierceville Rd Cottage Grove Wisconsin 53527 More information coming soon PWSA Quarterly Pulse July 2020 Vol 2 3

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PWSA USA General Membership Meeting Caribe Royale Hotel Orlando Florida October 27 2019 The meeting was called to order by Chairman Michelle Torbert at 11 58 a m EST In attendance were Board Members Crystal Boser Mitch Cohen Dan Driscoll Christine Pete Girard Tim Hearn Jim Kane Rob Lutz Tammie Penta Kristi Rickenbach Paige Rivard Marguerite Rupnow Denise Servais Michelle Torbert Officers Julie Doherty Pam Zambrotta Chief Executive Officer Steve Queior PWSA USA Office Staff Rikka Bos Stacy Ward Board members and Convention Committee chairs were recognized The two outgoing board members Denise Westenfield and Mary K Ziccardi were thanked for their service Steve Queior shared the three year strategic plan He announced the creation of a residential care database listing over 90 facilities that will be available to all of our families It was noted that more than 6 of every 7 raised goes to fund programs and services for our families Dr David Agarwal provided an overview of the medical and scientific conferences which encompassed 14 hours of scientific and medical presentations done over a two day period Drs Jim Loker and Ann Manzardo coordinated the conference Four areas of focus were clinical care data analysis current medications and new medications Sleep apnea carries over to the day resulting in a high energy state By interrupting the sleep apnea the drive during the day can be improved There are models of excellence throughout the country of multidisciplinary clinics The effect of the syndrome on siblings was discussed Practice guidelines are needed for CBD and its use Potential new medications including GLWL 01 Livoletide Millendo Therapeut ics Carbetocin and DCCR Soleno Therapeutics were discussed Families were encouraged to participate in clinical trials in their area Meeting adjourned at 12 25 p m Respectfully submitted Julie L Doherty Secretary Member Spotlight Hi my name is Spencer Ginyard and I am an adult who has PraderWilli syndrome I have just graduated from Cal State University San Bernardino I received a bachelor s degree in English with an emphasis in creative writing I am an honors recipient from Delta Alpha Pi Honor Society and have made the Dean s List multiple times I like to write poetry and nonfiction pieces I am looking forward to writing my first nonfiction piece on Prader Willi syndrome Through my educational experiences and dealing with the disorder I want to inspire children and their parents and give them hope as they journey through life My educational journey was a struggle In junior college I had to learn how to learn all over again I overcame all the obstacles that I faced with my faith in God and lots of determination PWSA Quarterly Pulse July 2020 Vol 2 Quarantine just living life in the moment making life the best as it can be like trying to do your best when you are taking a test thankful that he is healthy corona virus free just being able to breath and being alive thinking when the world is going to be back in action so his life can be free and be a human again and not be considered as an inmate be able to do something fun going back to be considered as a hilarious comedian which acts like a clown like you are at a circus going hiking bowling with friends going to movies with mom in reality he is not the same as before life is horrible wishing its back to how it was before 4

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PWSA USA 2020 2023 Board of Directors OFFICIAL BALLOT Voting Instructions ATTENTION MEMBERS ONLY 1 Review the candidates statements printed on the Slate of Candidates 2 Cast your vote on the Official Ballot voting for four 4 candidates only Insert the ballot into the Official Ballot Envelope 3 Print and sign your name on the Official Ballot Envelope Affix postage Mail it to PWSA USA postmarked no later than August 17 2020 4 If you receive the Pulse Quarterly only in an electronic form and were not provided with an Official Ballot Envelope please mail your ballot to Julie Doherty Secretary PWSA USA 8588 Potter Park Drive Suite 500 Sarasota FL 34238 5471 In the return address portion of the envelope print your name and address and the following statement I am We are a PWSA USA Member in Good Standing Eligible to Vote Place your signature below this statement Deadlines The deadline for voting is August 17 2020 Ballots postmarked after August 17 will not be counted Confidentiality Your vote will be kept confidential PWSA USA staff will verify voter eligibility and separate the Official Ballot from the Ballot Envelope before the Ballots are tallied Voting Criteria Voting members must be Members in Good Standing with PWSA USA Membership dues must be current and paid in full or a dues waiver granted Member Types Eligible to Vote Each membership type whether individual family or professional is entitled to one vote Cast your vote for the 2020 2023 Board of Directors Vote for four 4 of the candidates listed below Mitch Cohen Pete Girard Jeffrey Covington Tammie Penta Corrections to the 2019 Annual Membership Meeting Minutes No Corrections Necessary if neither box is checked we will assume you have no corrections to the minutes PWSA Quarterly Pulse July 2020 Vol 2 5

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Stronger Together continued from page 1 relationships are as important to well being as food security and physical activity So what can we do to strengthen our relationships during COVID The answer may lie in engaging in high quality connections HQC or short term positive interactions within an ongoing relationship According to researchers relationships support our health and happiness through HQCs and we get a positive boost of energy when we encounter someone who expresses genuine concern for how we are doing We don t need to spend a lot of time together in person we can practice having HQCs by making intentional connections with people in our lives and showing genuine thoughtfulness care and concern in our thoughts and actions towards them For families connecting with friends distant family members and neighbors and inquiring about their well being need not take place in close proximity and can help those with PWS feel positive during this time Connecting online or via phone on a regular basis is important when possible But positive emotion also comes from supporting each other when we re apart Leaving a care package on a neighbor s doorstep taking the time to write a letter to a family member or helping a person in need in the community can provide a brief positive interaction and boost the neurochemicals that produce positive emotions Both giver and receiver benefit Reflecting on the good in the experience later or savoring it can help to make our positive emotions last longer In turn positive emotions provide a buffer against the negative impact of social distancing Whether we re putting together a family photo album or writing about what we re grateful for in others dwelling on the good in our relationships can help build an enduring sense of connection With a little effort we may find that when we commit to genuinely supporting others in small ways whether they be family friends or the community we can strengthen relationships that will last well into the future 2021 PWSA USA NATIONAL CONVENTION Lake Buena Vista Palace Orlando Florida June 23 26 2021