August 2015 Update


The Cure GM1 Foundation is excited to announce our very first invitation only event is coming in November!  The details are being determined now.  The event will take place here in California.  The event is so special, we’re only allowed to talk about it by private invitation!  Curious?!  Do you believe in our mission?  Would you consider coming to California for the event?  If you have not done so already, please consider filling out either the Cure GM1 Registry for affected families or the Stay In Touch Form.  This event is truly cool, unique, special and well, RARE.  


We need your help!  For the invitation only event, we will be holding a private auction.  Do you have sports items, memorabilia, VIP tickets, art work, etc.?  It would be wonderful to help us gather more items for this November event.  Be creative! 


Porter Heatherly’s 3rd Birthday is coming!  His family has been so kind as to create a wonderful event in his honor to celebrate and to create a legacy for Porter.  This celebration will be held in Auburn, Alabama on September 12th.  Here’s the link to purchase tickets!

GM1 Families Unite!

Families are joining the fight for a cure for GM1.  There are more families than you might imagine in our registry.  Change is possible!  The more people who rally behind the cause, the more impact we can make.

It is the mission of this foundation to fund research for the benefit of all those who suffer from GM1 Gangliosidosis.  There are no paid employees and there are very few costs.  We donated $412K this year to gene therapy at Auburn and UMass.  The remaining funds are reserved towards making more research grants and very minor expenses such as internet hosting, etc.   If you would like to help or you have any questions, please do not hesitate to contact us.

Our Classical Benefit Concert

What an incredibly beautiful and touching event!  The venue was gorgeous.  The musicians were world-class and it was a memorable and successful event.  Over $10K was raised through the publicity and the event itself.

19656069353_306f67ec5f_z Pianist Gloria Chien, Pianist Hyeyeon Park warming up with Sweet Iris before the concert.


Iris hanging out with rare disease advocate and amazing extreme athlete Noah Coughlan who ran across the country on foot 3 times to raise awareness for rare diseases.


Violinist Andrea Segar performing


A group photo of the performers and musicians who support our cause and foundation.

In conclusion, here are some fun facts and numbers as of 8/18/15.

  • The original Sweet Iris video has been watched 11,140 times.
  • The Frozen Medley video has reached 64,810 people in less than a month.
  • has had 24,704 views thus far.
  • A blog post about Iris was posted today to 1.2 million followers via Scary Mommy.  It was shared well over 2000 times in less than 1 day.


Fundraising is hard work, but there is also an element of luck and surprise.  This year, we had 2 $100K donations from separate donors given over a period of 2 days!  Keep hope and join the fight!


August 2015 Update
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