August 2017 Cure GM1 Update

Fundraising this year has far surpassed our expectations.   A Cure for Clara jumped into action immediately following Clara’s diagnosis one year ago and those efforts were tremendous and very much appreciated.

Furthermore, fundraising on the part of many families and awareness campaigns continue to grow.  Cure GM1 exists due to extreme generosity and hope for change.  During the month of July, $23K was raised!

Despite the fact that GM1 Gangliosidosis is a very rare disease, the power of patient advocacy is undeniable.   Do we wish clinical trials were happening yesterday?  Absolutely.   Continued work and funding is still required to bring treatment to those in desperate need.  Additional funding in the form of government grants, venture capital and support from bio tech are also necessary.

To push for more progress, there are many ways to drive efforts forward.  Please continue reading and consider how you can help today!

What can you do to help now?

This Fall, please consider running or walking to help Cure GM1!  There are so many possible ways to help.  Please also do not hesitate to contact us with questions or to ask for assistance.

Sign up now for our Run/Walk Challenge!

Click the above image to learn more!  There are so many possible ways to help: Buy a t-shirt, post pictures on social media in the shirt, ask your friends to sponsor you, share the story of the child whose story you are telling!

More Races!

Here are a few upcoming events to consider joining!  There are races all over the world.  Walks and races are great ways to raise funds and awareness.

Join Fundraising for Florence in the UK and run in the UK on Sunday September 3rd 2017!

Consider a race in Northern CA in honor of Iris!

Simply contact us and let us know if you are willing to run in either event.  We can help with organizing the fundraising and with t-shirts, etc.!

Get on a horse and Saddle Up for Sweet Iris!

A super fun riding show and event in honor of Iris on September 17th, 2017 at the SydMor Arena in Monongahela PA!  Registration begins at 7am!

In Memoriam Josiah Scaparotti

From Sara, Joey’s mother:

“Our dear sweet Josiah finally let go and passed into the arms of Jesus this morning. Our arms feel so empty and there is such a void in our home today, yet our hearts are full as we think of our little boy running painless, alive and free.

We are eternally grateful to all of you for the amazing love and support this community has shown us and our family.”

Josiah Michael Scaparotti
3/2/14 – 8/12/17

Every Donation Matters

Your donation today will help save children’s lives.


All donations are tax exempt and we will send you a receipt for your tax records so long as the necessary contact information is provided.  There are no paid employees at Cure GM1 and the maximum amount humanly possible is being put towards saving children’s lives.

August 2017 Cure GM1 Update

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