Parents united to find a cure
  • Home
  • About Us
    • Mission Statement
    • Our Goal
    • Board of Directors
    • Scientific and Research Advisory Board
    • Strategic Plan
    • Financial Statement
    • What is Sanfilippo Syndrome?
    • Contact Us
  • How You Can Help
    • Donate
    • Host or Attend an Event
    • Products / New Items for sale fall 2017
    • Become an Affiliate
  • Research
    • Research Projects
      • Research – Australia
      • Research – Canada
      • Research – France and Netherlands
      • Research – Italy
      • Research – Poland
      • Research – Spain
      • Research – United Kingdom
      • Research – United States
    • Request for Proposals
  • Therapies and Upcoming Treatments
  • Grants
  • News
    • Gene Therapy
    • Press Releases
    • Community News
    • Resource Links
  • Events

Become A Hero Among Us

March 17, 2016 by

Hello I’m

Patty Taormino

My goal is to raise $10,000.00

Patty_Taormino_241

I would like to introduce Jesse, he has Sanfilippo type A. After 4 years of misdiagnosis, he received the diagnosis of Sanfilippo type A at 6 years old. We were told at that time (2001) that he most likely would not live beyond 10 -12 years old. He has 2 severe mutations. With diligent hard work and much research Jesse is still with us. He turned 21 years old on May2, 2016. He is now graduating from Maryland School for the Blind after attending the past 6 years there in the multiple disabilities program. He has thrived at this school beyond all expectations! We are so grateful for every teacher, therapist, advocate, 1;1 aide, nurse, and all the friends he has made at the school over the years. He has had some amazing support even before diagnosis from many of his teachers, therapists and aides at previous schools too! Lois T. Murray School and Moravia Park Elementary, Armistead Gardens Elementary and Maryland Infant and toddler’s Hearing and Speech program.

So with all this said, we would like to announce and celebrate his birthday, graduation, and MPS AWARENESS Day, the entire month of May into June. His birthday is May 2, MPS AWARENESS DAY is May 15th, and Graduation is June 1, 2016.

In celebration we would like to challenge all who read this to donate at least $21.00 to Team Sanfilippo Foundation in honor of Jesse and on May 15th please wear purple for MPS Awareness Day! If you can donate more, please do. We are continually funding research for both younger and the older kids who will not be eligible for gene therapy or accepted in initial ERT trials and so on. There is so much to do for so many kids, even if just to pursue a better quality of life if they can’t be cured.

Our goal is to raise at least $10,000 for the month of May and June. We are also asking if you work somewhere, please share this with your employer and friends and ask employers if they will match the entire months’ worth of giving or at very least whatever amount the employees at your work place donate.

We are the only foundation working to find something for all Sanfilippo children and young adults. Our Jesse is a fighter, as long as he fights, so will we! We hope that in your heart you will help us this fight too!

God Bless you all,
Patty, Jack and Jesse Taormino

The mission of the Team Sanfilipo is to fund research and provide support for families affected by MPS and related diseases.Please help our family and support the Team Sanfilippo. Every donation will make a difference in the lives of those affected by MPS and related diseases. Please visit teamsanfilippo.org for more information.

Donate Online

Donation Meter

$147
Raised
Date Contributor Donation Comment
05/03/2016 Roberta Blair $21

Wishing you a belated happy birthday Jesse! Congratulations on your upcoming graduation.

05/03/2016 Patricia Taormino $42
05/05/2016 Adam Shaywitz $42
05/09/2016 Stacy Shoup $42

Happy Birthday, Jesse!

Donation Total: $147
Return to list

How You Can Help

There are many ways you can get involved in the great work of our organization:
  • Host or Attend an Event
  • Become an Affiliate
  • Make a Donation

Join Team Sanfilippo & Follow Us

Return to top of page
Site Map
© 2018 Team Sanfillipo • Log in