• What is GSD?
    Glycogen Storage Diseast Type 1a (GSD1a) is the most common genetically inherited glycogen storage disease. Individuals with GSD1a have a defective gene for the enzyme glucose-6-phosphatase, resulting in the inability to regulate blood sugar (glucose). Hypoglycemia in GSD1a patients can be life-threatening, while the accumulation of the complex sugar glycogen in certain orgains and tissues can impair the ability of these tissues to function normally. Most patients with GSD1 need to an external source of glucose every 2-4 hours in order to survive.
  • Our Foundation
    Our Foundation
    The Children's Fund for Glycogen Storage Disease Research is a public not-for-profit (501c3) foundation established in 2002 to make a difference in the lives of children and their families affected by GSD1. Our foundation is run by parents, family and friends of children affected by GSD1. All fundraising and administration are done on a 100% volunteer basis.
  • Finding a Cure
    Finding a Cure for GSD
    As little as 40 years ago, a child born with GSD1 had very little chance of survival beyond one or two years. Today, thanks to increased awareness, medical advances and generous supporters, children are thriving and a cure is on the horizon.
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The Children's Fund for GSD Research is a not-for-profit (501c3) foundation, established to benefit children born with Glycogen Storage Disease (GSD1).



What a fun and meaningful night we had at The White Party on September 21st.  Thank you to our sponsors, in-kind supporters, underwriters, auction donors, contibutors and guests.  With your help, we were able to raise over $300k for The Children's Fund for GSD Research.  We are truly grateful for your support.  Please click below to view photos from the gala.  

Photo Op Photos

Candid Photos

Advisory Board for GSD1a Community

Ultragenyx Pharmaceutical Inc. is developing an Advisory Board for GSD1a Patients and Caregivers.  Please read through the flyers below.  If you are interested in participating, please reach out to the number or email provided.  Thank you. 

Great News in the World of GSD!

Positive results in Phase 1 Gene Therapy Trials. 

Read the Article 

Super Bowl Boxes for GSD!

Thank you to everyone who participated and
CONGRATS to all our winners!!

Super Bowl LIII Raffle

Congratulations to Allen Schulman who won two tickets to Super Bowl LIII on February 3rd at Mercedes-Benz Stadium in Atlanta, GA plus 3 nights accommodations at Omni Hotel, CNN Center in Atlanta.  

Thank you to everyone who participated!   With your help we raised almost $50,000 for GSD research and every penny brings us closer to a cure.  We are so grateful for your support. 

Congratulations Allen!  Have a great time at the game and be sure to send pics!!


On October 21st Ryan James and Cameron Gussin hosted a joint Mitzvah Project in support of Jamie Gussin and The Children's Fund.  Thank you to everyone who laced up their sneakers and participated in the Fun Run/Walk at Coral Reef Park in Palmetto Bay, FL.  It was a great day and over $2,000 was raised for GSD Research.  Mazel Tov to James, Cameron and their families.  We appreciate you! 


On November 3rd, Brian Makovsky, friend of The Children's Fund and owner of Intense Training in Coral Springs, FL, participatied in the IRONMAN Triathlon in Panama City Beach, FL.  It takes an insane amount of preparation and training to accomplish this.  Thank you Brian for pushing yourself to the limit for our cause.  Thank you to Celebrity Cruises and Generation UCAN for sponsoring Brian, and to everyone who has generously donated to support his efforts.  With your help, Brian raised over $5,000 for The Children's Fund!!! Woohoo!!




Karaoke Night!

Thank you to everyone who joined us fort KARAOKE NIGHT for GSD!  What a blast!  A big shout out to Desiree Makovsky and the CSRIPS Paramedic Class 03-17 for organizing such a great event and for supporting The Children's Fund for GSD Research.  Thank you Bridget and everyone at Wings Plus - you guys are amazing!  And to Rodrigo and Sir Diego of Sound Fun Party for being the life of the party.  Thank you everyone for your generosity. We are so grateful to have your support!


                                             Karaoke Night 2018


On Monday, July 24, 2018, we reached a milestone when the first dose of gene therapy was delivered to a GSD patient in the Lab at the University of Connecticut.  This is only the beginning of the study but we are hopeful for the future.  Thank you to everyone who has supported our cause and helped us get to this point.   We will keep you updated on our progress.  

Read the Article

FDA Approves Gene Therapy for the Treatment of GSD1a

On April 23, 2018, Ultragenyx Pharmaceuticals, a biopharmaceutical company focused on the development of novel products for the treatment of rare and ulta-rare diseases, announced approval by the FDA to move forward with Gene Therapy for the Treatment of GSD1a.  

Ultragenyx will work closely with Dr. David Weinstein and his team at UConn to deliver the gene therapy treatment to replace the missing or faulty gene, corrrecting the underlying defect to restore metabolic function.  The first patient is expected to be treated  in June of 2018.  

Read the Press Release

11th Annual GSD Gala
Hot Havana Nights

Thank you to everyone who attended or contributed to our 11th Annual GSD Gala, Hot Havana Nights on Saturday, February 3, 2018 at Margaritaville Beach Resort in Hollywood.  With your help, we raised over $300,000.  100% of this money will be used to help fund promising research towards a cure and/or studies that will help to improve the lives of patients with GSD.  We are grateful for your generous support.  



And the winner is….

Tyler Dritz of Westlake Village, Ca. The winning ticket was sold by the Julius family.  Thank you to everyone who participated and continues to support our cause.  We are truly grateful.  

Have a great time in Minnesota Tyler!!

Concert for a Cause

Jake Gordon (GSD1a) and fellow band members of JTPH (Matty Templeton, Jacob Zinn, Michael Grapel and Alex Milne) performed a benefit concert at Chappaqua Station on October 26th.  The evening was a huge success and they raised over $3,000 for GSD Research.  Thank you JTPH!  YOU GUYS ROCK!!  



Proudly Supporting GSD Research

Jonah Feldman presents a check for $158,329.00 from The Children's Fund for GSD Research to Dr. Youngmok Lee, Assistant Professor of Medicine, and Ana Estrella, Research Assistant, at UConn Health.  We are proud to continue our support of the GSD program led by Dr. David Weinstein at UConn.  

With your help, we will find a cure.  

Dr. Weinstein now in Connecticut!

Dr. Weinstein and his world-renowned Glycogen Storage Disease Program has moved to The UConn's School of Medicine and Connecticut Children's Medical Center.  

Learn More


Shop at AmazonSmile and help cure GSD!

AmazonSmile is a simple and automatic way for you to support THE CHILDREN'S FUND every time you shop, at no cost to you. When you shop at smile.amazon.com, you'll find the exact same low prices, vast selection and convenient shopping experience as Amazon.com, with the added bonus that Amazon will donate a portion of the purchase price to our foundation.   Click below for more details. And remember to choose The Children's Fund for Glycogen Storage Disease Research as your charity of choice!

Tell Me How

Sleeping Through the Night

Glycosade, manufactured by Vitaflo, is an extended release "super starch" that enables GSD patients to safely last 7-10 hours overnight without additional dosing.  This is one of the greatest advancements for Glycogen Storage Disease in over 25 years. 


Learn More About glycosade

Shopping for a Cause

iGive.com has partnered with over 1,577 brand name stores to help us raise money for The Children'S Fund. Each time you make a purchase at one of these stores (PETCO, Bed Bath and Beyond, Shoebuy.com, BJs Wholesale Club, Drugstore.com, The Body Shop, Amazon, Best Buy, etc.) a percentage is donated to our foundation. It only takes a minute to sign up and doesn't cost you anything. We have already raised over $1,500.00 for research!  Thank you so much to all of our dedicated shoppers!

Start Shopping!

Congratulations Dr. Weinstein!


Weinstein earns global recognition for his work with Glycogen Storage Disease as recipient of the prestigious Order of the Smile Humanitarian Award.

See Full Article

Hopes & Dreams

We hope you enjoyed our recent newsletter, Hopes and Dreams.  We've made tremendous progress over the last few years.  Your generous donations will help us to keep the progress towards a cure moving forward.  

Please click HERE to make an online contribution.  

Didn't receive a copy of Hopes and Dreams?  Click HERE to download a PDF now.

Thank you for your support! 



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