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Florida dad inspires legislation
that benefits PMS families
By Ashley Shattles
Chair, Legislative / Advocacy Committee
Florida Gov. Rick Scott recently signed into law a bill whose inspiration was an online petition launched by the father of a child diagnosed with Phelan-McDermid Syndrome.
The bill requires the state to provide non-waitlisted Medicaid waiver services to individuals with Phelan-McDermid Syndrome, also known as 22q13 Deletion Syndrome. More than 100,000 Floridians signed the Change.org petition started by Greg Creese, father to Avery, which highlighted the need for developmental disability services in Florida, regardless of income.
The petition gave Creese, who launched his campaign last year, the chance to meet with media and politicians to raise awareness of the need for services. Creese believes that advocating for his child and sharing his personal story led to a successful outcome for all those affected by PMS.
“Sharing about Avery put a human face to our struggles and it was the politicians who chose to specifically name PMS as a syndrome which deserves recognition and assistance from the state,” he said. “My fight was for everyone but I shared enough about PMS that it became clear people needed to help."
Susan Lomas, president of the Phelan-McDermid Syndrome Foundation and mother to Sam, said Creese’s campaign shows the power of parent advocacy. “So many single acts snowball into collective action,” she said. “Working together is powerful.”
Once legislators suggested adding PMS to the bill, Lomas worked with their staffs as well as the Agency for Persons with Disabilities (APD), which manages Florida’s Medicaid programs, to finalize the bill’s PMS and 22q13 Deletion Syndrome language.
The Phelan-McDermid Syndrome Foundation’s legislative advocacy gives a voice to children and adults with PMS. Whether at the state level or in Washington, D.C., PMSF supports initiatives that will improve the lives of those affected by PMS.
Florida’s general Medicaid bill requires the APD to provide Medicaid waiver services to those with PMS or 22q13 Deletion Syndrome without being placed on a waiting list. The waiver allows a person with developmental disabilities to live at home rather than in an institution. It also provides for personal care services, respite, day activities, consumable medical supplies (e.g., diapers), durable medical equipment (e.g., a wheelchair), therapies, environmental modifications, among other provisions.
WATCH: "The PMS International Registry:
What are you doing with my data?"
This Webinar will teach you about the types of data collected in the Phelan-McDermid Syndrome International Registry, what it tells us about our community, what opportunities and limitations it offers and more.
Rebecca Davis, the PMS_DN Data Coordinator and Registry Coordinator, provides an overview of the International Registry including summaries of who participates, where they live, age, sex and race.
Rebecca will also review how data is collected, how the data is used, opportunities (including the PMS_DN) and limitations of the registry and how you can make sure your data is up to date.
CLICK HERE TO WATCH
Once again, #PhelanLucky exceeds our expectations
We sold 2,650 shirts, raised $45,000
By Jennifer Randolph
Chair, Fundraising Committee
I can't begin to tell you all how thankful I am for everyone who helped to make the 2016 Phelan Lucky campaign amazing! Whether you liked our page, shared our event or bought shirts we are so appreciative for all your help. We sold more than 2,650 shirts and raised more than $45,000 for the Phelan-McDermid Syndrome Foundation.
We sold at least one item in all 50 states, the third year in a row that we have accomplished this goal. We also are sending shirts to Belgium, Brazil, Canada, the United Kingdom, Italy, Ireland, Australia and Malaysia.
We had wonderful help from a number of celebrities who joined our campaign. Among them was Chris Snee and Phil Simms of the New York Giants, Justin Perillo of the Green Bay Packers, Jordan Hicks and Vince Papale of the Philadelphia Eagles, Delaware Gov. Jack Markell and comedians Jack Gallagher, Bobcat Goldthwait and Jeff Garlin. WNBA MVP Elana Delle Donne, runner Dick Hoyt and his son, Rick, Real Houswives of New Jersey's Kathy Wakile, Jacqueline Laurita and Dolores Catania and the New Orleans-based folk group The Deslondes also joined us in our effort to raise funds and awareness for PMS!
Post your pics with your new shirts
Don't forget to visit the PHELAN LUCKY Facebook page to see all the great pictures and inspiring stories. We would also like to thank the team from Booster.com for all their help and support in making all of our Phelan Lucky campaigns such a success.
You should soon receive your package from Booster. This year, let's try to get some truly unique pictures of everyone #PhelanLucky all over the world. Be sure to post them to the Phelan Lucky Facebook page or tag me on your photo. Also, remember to use the #PhelanLucky and #PMSF hashtags.
Let your voice be heard
Phelan-McPosium at July conference will give parents
a say in future research into Phelan-McDermid Syndrome
There's something new coming to this July's international conference. It's called the Phelan-McPosium, a patient-centered outcome workshop that will address your concerns about your child with Phelan-McDermid Syndrome Foundation through education, polling and discussion.
It's also an opportunity to help influence the direction of future research studies.
Some of the topics to be discussed include genetics; cognition, learning and development; language, communication and social behavior; sleep; challenging behavior; regression; epilepsy and more.
Here's how it'll work:
-- The one-hour sessions over two days will be divided into three, 20-minute blocs.
-- The first will be a review of the session's topic, the second will be small-group discussions and the final 20 minutes will be for a panel of researchers to summarize the takeaway messages and discuss potential research studies to address the most pressing concerns of the patient community.
-- We'll capture your priorities by using the PollEverywhere app and moderators will take notes from the discussions.
-- Parents and caregivers will also have a chance to talk to researchers who are part of the sessions.
If you can't attend the conference you still can participate in the workshop. We'll live stream the sessions and you'll be able to submit questions and comments via social media. You'll also be able to use PollEverywhere to log your priorities.
There is no extra cost to attend the Phelan-McPosium, it's part of your conference fees to attend the "Embrace, Engage, Empower" International Support Group. You do not have to attend all seven sessions, but your input on as many topics as possible is important to directing research.
You'll be hearing more about the Phelan-McPosium as we get closer to the conference in July. If you have questions you can email Geraldine Bliss.
We hope to see you at the conference
and the Phelan-McPosium!
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Copyright © 2016 Phelan-McDermid Syndrome Foundation. All Rights Reserved.
Mark your calendar
Make a note of these significant upcoming events.
April National Autism Awareness Month
April 21-22 World Orphan Drug Congress USA, Hilton, Washington, Washington, D.C.
May Mental Health Awareness Month
April 15 Did you update your preferences in the PMS International Registry? Contact Jackie Malasky.
May 10 Shopping online for an upcoming graduation gift? Shop iGive.com or Amazon Smiles and choose Phelan-McDermid Syndrome Foundation as your charity of choice. Find out more here
May 11-14 IMFAR 2016 Baltimore Convention Center, Baltimore, Maryland. PMS parent and Research Support Committee Chair Geraldine Bliss attending
May 14 PMSF UK / High Five joint North West Family Day. Martin Mere Wetland Center. 10 am. Contact firstname.lastname@example.org.
May 20 Not sure if you want to become a registered member of the PMS Foundation? It's free, and there are lots of benefits? Follow the Membership link in the menu list on the left side of this page
June 1 Take a few minutes to look over the valuable family support and medical information under the Resources link in the menu list on the left side of this page
June 18 Northern Ireland / Ireland Family Day. 11 a.m. Alley Cats, Coleraine and The East Strand, Portrush. ontact Rosie at email@example.com or 07879 436 743
July 1 Did you know? Signing up to participate in the International Registry is not the same as signing up to be a member of the PMS Foundation. For the registry, go here. For Foundation membership, go here. Both are FREE!
July 20-23, 2016 PMSF International Conference, Caribe Royale Hotel and Conference Center, Orlando, Florida
September World Alzheimer's Month
Sept. 20-21 Giving Challenge, sponsored by the Community Foundation of Sarasota County, Fla. Noon to noon. Co-sponsor is the Patterson Foundation. Details to come.
Sept. 21 World Alzheimer's Day
Aug. 20 Logan's Heroes 7th Annual Cruise for 22q, Millington and Davison, Michigan. For tickets, sponsorships, donations or other event information, contact Debbie LeClaire.
October Learning Disabilities Awareness Month
Oct. 22 North East Family Gathering. 12:30-3:30 p.m. The Ark@Crawcrook, Main Road (B6317), Ryton, Tyne & Wear. Contact Gemma Smith Jibberjabba2@gmail.co.uk or 07971468599.
Nov. 7 Annie’s 7th Annual Golf Classic at Trophy Club Country Club in the Dallas-Fort Worth, Texas, area. For event information, donations or sponsorships, contact Veronica Frunzi.
Nov. 15-17 World Orphan Drug Congress Europe, Sheraton Brussel Hotel, Brussels, Belgium