October 2015 Update

Porter’s Birthday Event Donations Continue

Porter, Sara, and Michael Heatherly recently announced that they received several large donations in addition to the donations raised at Porter’s 3rd birthday party last month!  How wonderful that the giving has continued and that another $5000 dollars in donations brought the total for his birthday event to over $30,000.  That’s fantastic and we are very grateful on behalf of our foundation and all those in the GM1 community.

In Loving Memory Sage Hoffer


It is with deep sadness in our hearts that we report another sweet child’s battle with GM1 Gangliosidosis has ended.  Sage Hoffer passed away on September 30, 2015.  He was only 10 months old and unfortunately, did not live to see his first birthday.  He did however live a beautiful life filled with smiles.

In our September update, we reported that Ruby Webster passed away.  We have a small, but extremely supportive GM1 community and we deeply mourn the passing of Ruby and Sage in the month of September of this year.  Our hearts go out to the families.  Ruby and Sage’s memories will be cherished always.

Upcoming Benefit Screening in Collaboration with Global Genes


Invitations have been sent and the word is out!  We’re collaborating with one of the world’s leading rare disease organizations in the world to bring a very special event together.  The scientists whose research we are funding will be in attendance for the event and for interviews for a documentary feature film that will have a segment featuring GM1 Gangliosidosis!

For more information, please contact us.  There are many ways to help!

  • Volunteer
  • Donate an Auction Item
  • Spread the word about the event
  • Come to the event!
  • Can’t come and still want to help?  Please consider a donation.

Our Very First T-Shirts


We did it!  We tried a Booster campaign and we’ve got www.curegm1.org on people’s backs now and lots of Rare Superstars getting lots of love!  Thank you so much to everyone who purchased shirts.  Please be sure to share pictures on social media and to wear them proudly!

In summary, It’s actually been a pretty good month!  We are rare, but we are mighty.   We are truly grateful for all the help we receive!  Donations are coming in still from Porter’s event and in just the past week, Iris’ supporters brought in another $3,100.

We believe Awareness = Funding = HOPE!   Your support and donations make a difference.


October 2015 Update
Tagged on:

Leave a Reply