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Phelan-McDermid Syndrome added to list of Social Security Compassionate Allowances

Parents and caregivers of people with Phelan-McDermid Syndrome can now expect to have their applications for Social Security benefits quickly reviewed after the Syndrome was one of 35 added to the Social Security Administration’s Compassionate Allowances database. Families will no longer have to wait for weeks, months or even longer for confirmation PMS meets Social Security disability standards to begin receiving benefits.

 

“This is a really important development for our families,” said Susan Lomas, President of the Phelan-McDermid Syndrome Foundation Board of Directors. “This approval from the Social Security Administration recognizes the long-term impact on those with Phelan-McDermid Syndrome and their families. The Phelan-McDermid Syndrome Foundation would like to thank Michael J. Astrue, the Commissioner of Social Security, for including Phelan-McDermid Syndrome among the 35 new conditions that qualify for Compassionate Allowances.”

 

Phelan-McDermid Syndrome, also known as 22q13 Deletion Syndrome, is a genetic condition. The leading cause is a disruption of the SHANK3/ProSAP2 gene on Chromosome 22, but research is being encouraged to identify other genes that contribute to the phenotype. SHANK3’s most important role in development is in the brain of those affected. Defects of the SHANK3 gene are highly associated with autism and many of those diagnosed with Phelan-McDermid Syndrome also are diagnosed with autism or autism spectrum disorders.

 

Compassionate Allowances allow for speedy decisions and case resolution for those who qualify for benefits. It doesn’t guarantee approval of disability benefits, but speeds up the review process. It is not a separate program from the Social Security Disability Insurance or Supplemental Security Income programs.

 

Phelan-McDermid Syndrome was one of 35 conditions added this year to the list of conditions that qualify for Compassionate Allowances, bringing to total number to 200. The Social Security Administration made the formal announcement at an event Dec. 6 at the Hart Senate Building.

 

“We have achieved another milestone for the Compassionate Allowances program, reaching 200 conditions,” Social Security Commissioner Astrue said in announcing the new conditions that qualify. “Nearly 200,000 people with severe disabilities nationwide have been quickly approved, usually in less than two weeks, through the program since it began in October 2008.”

“Under this program, our U.S. families will be able to get a fast-track review for benefits,” PMSF’s Lomas said. “Our Foundation’s focus is family support and this is another example of how we have worked to make life a little easier for our families. I would like to thank our volunteer parents who worked so hard with the Social Security Administration to add Phelan-McDermid Syndrome to the list of conditions that quality for quick review under the Compassionate Allowance program.”

 
PMSF International Registry

Be Part of Our International Registry

The Phelan-McDermid Syndrome Foundation announces the launch of its International Registry. If you are a parent or caregiver to someone with PMS, then you want to be a part of building a better future.

 

We need your help in taking a critical step toward learning more about those affected by Phelan-McDermid Syndrome and possibly identifying promising treatments to help people with PMS experience life to the fullest.

 

The Registry will provide valuable information for families and doctors to make the best care decisions possible, and it will help researchers decide what are the most important challenges to address in PMS. Establishing the registry addresses two important scientific needs. First, scientists studying PMS need accurate, firsthand information to understand how PMS affects people. Second, scientists who are ready to start studies, such as those that test new treatments, will be able to access The Registry to identify people that may be eligible to participate in studies. In either case, your privacy is assured while the cause of research is advanced. While raw data about PMS will be available to scientists, they won't have access to any identifying information about your child unless you agree to have your child's identity released.

 

The PMS Foundation is requesting your help.

 

The first step is to read “Your Participation” at www.pmsiregistry.org. If you agree to be a part of the registry at no cost, indicate your consent at the bottom of the form and “register” for a login username and password. Once you create this login, you are ready to create a registry profile.

 

By participating, you also can help raise money for the Foundation. Go to www.pmsiregistry.org NOW to learn how $3,000 will be donated to PMSF through participation by you and others.

 

The Foundation and its Board of Directors believe firmly in the enormous benefits of creating this important one-of-a-kind library of information about PMS. You have told us medical and scientific research is a very important aspect of your support for the Foundation and we feel this is a key step in realizing your goal.

 

Please join us in making the launch of the registry a success.

 
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Mark your calendar

 

Make a note of these significant upcoming events.

 

August Shopping online for a special event or birthday? Shop iGive.com or Amazon Smiles and choose Phelan-McDermid Syndrome Foundation as your charity of choice. Find out more here

 

September World Alzheimer's Month

 

Sept. 15 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

 

Sept. 20-21 Giving Challenge, sponsored by the Community Foundation of Sarasota County, Fla. Noon to noon. Co-sponsor is the Patterson Foundation. Like our Facebook page to get all the details!

 

Sept. 21 World Alzheimer's Day

 

Sept. 22-23 Global Genes Rare Patient Advocacy Summit, Huntington Beach, California. Details here.

 

Sept. 28-Oct. 1 National Society of Genetic Counselors, Seattle, Washington

 

October Learning Disabilities Awareness Month; Disabilities Awareness Month

 

Oct. 10 Did you update your preferences in the PMS International RegistryContact Jackie Malasky.

 

Oct. 15 Rare Disease Day New York. PMS families will be staffing an informational table.


Oct. 18-22 The American Society of Human Genetics, Vancouver, Canada

 

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

 

Dec. 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 hereBoth are FREE!


Dec. 1-2 New England Regional Genetics Group, Woburn, Massachusetts


Dec. 25 Christmas


2017

Feb. 4 Jackson's Trivia Night. Details to come.

Feb. 28 Rare Disease Day


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