My Personal Fundraising Page

$22.00 for 22q13 in 22 Days

Hello Everyone!

As some of you may or may not know our son, Kyle 26 was diagnosed with Phelan McDermid Syndrome (PMS) or 22q13 Deletion Syndrome when he was 6 yrs old in 1998. It is an extremely rare genetic condition that is caused by a mutation of the SHANK3 gene or a deletion. In Kyle’s case he has a 7.1 MD and missing SHANK3. This condition affect him in many ways. Some of these symptoms include low core muscle strength, difficulty walking due to this, absent speech, most do not acquire functional language, moderate to profound developmental delay and about 75% have been diagnosed with an autism spectrum disorder, as well as many other chronic medical conditions.

There is currently no cure or treatment specifically for PMS, but we know how to manage many of the symptoms and researchers are working diligently to improve our knowledge of PMS and to find drugs and therapies that can help people affected by PMS. In spite of these medical, developmental, and behavioral conditions, people with PMS tend to be laid back, easily amused and often have a sweet and loving disposition, some can develop Bipolar type symptoms, mania, and extreme aggression behaviors. 

In honor of Kyle and his 2225 PMS friends, please consider donating to this amazing cause which goes directly to the Phelan McDermid Foundation. Let's try to help researchers find a cure and the foundation to be able to give families the opportunity to come together and support each other. Please help us to reach our goal! 

From our hearts to yours. Thank you!

Kelley, Don, and Kyle. 

 

Donations can be made on this fundraising page or you can send a check made payable to: The Phelan- McDermid Syndrome Foundation, in honor of Kyle Thorson to:

Phelan McDermid Syndrome Foundation
PO BOX 1153, 8 Sorrento Drive
Osprey, Florida 34229

Make your donations go twice as far! Many companies match donations made by their employees to our organization. Reach out to your HR department to see if they are one of them ☺ Our Tax ID # is: 04-3673104.

$69.30

achieved

$200.00

goal

of your goal reached

My Supporters

  • Janet Wilson For Alyssa’s PMS brother Kyle, and in memory of Ryan. October 2019 $23.10
  • Kelley Thorson October 2019 $23.10
  • Kelley Thorson October 2019 $23.10
  • Janet Wilson For Alyssa’s PMS brother Kyle, and in memory of Ryan. October 2019 $23.10
  • Kelley Thorson October 2019 $23.10
  • Kelley Thorson October 2019 $23.10