Nov. 2016 Cure GM1 Update

In Memoriam

Sadly, November has only just begun and two children, Maite and Porter passed away this month after battling infantile GM1 Gangliosidosis, the most severe form of GM1.  Read the touching quotes from their families below.  Our hearts go out to Maite and Porter’s families and to all those affected by GM1.

November 2, 2016 Maite Pascal Ugarte Seguel Passed Away 

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“Family and friends. Maite is free of GM1,…. she was our angel and warrior… surrounded by family and in true peace and love, we know that we’ll never have any comfort, but we are eternally grateful for your prayers for our little warrior.  She touched the hearts of many people with nothing but her spirit and strength. Thank you all for so much love and support.”

 

November 10, 2016 Porter Ross Heatherly Passed Away at 4 Years Old

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“Our beautiful Porter went to be with his heavenly Father this morning surrounded with love. We got to spend the whole week loving on our sweet angel at home. Michael and I are heartbroken, but find comfort that his earthly body is no longer suffering. We cannot thank everyone enough for the love we have felt over the past 4 years. Nothing can prepare you for such a loss but we find great comfort in knowing we will see him again one day in Heaven. This sweet child has taught us more than we could have ever imagined. Our house is eerily quiet without him here. Thanks again for your continued support of this sweet baby of ours.”

-Prayers for Porter

To read more about Porter, please see these articles and news coverage:

http://www.al.com/news/birmingham/index.ssf/2016/11/porter_heatherly_boy_with_rare.html

http://www.wtvm.com/story/33683799/opelika-toddler-diagnosed-with-rare-disorder-passes-away?clienttype=generic

Cure GM1 is truly grateful for the Heatherly family’s hard work and contributions to our nonprofit in honor of Porter’s legacy.  Porter and Maite both touched so many hearts during their short lives.

Fundraising and Gene Therapy Update

It’s really busy!  The 4th quarter is a very intense and productive part of the year!   Supporters are pitching in with fundraisers and there are many events: bake sales, restaurant fundraisers, runs, etc.   It’s very inspiring and we are truly grateful to everyone who is working so very hard!

October was tremendous!  Over $200K was raised in October primarily due to the amazing support for  A Cure for Clara.   We truly wish no one had to fight this disease, but we are honored to meet brave and generous individuals who are helping so very much.  We’re also sad to receive donations due to sweet angels who leave us entirely too soon.  We were touched to receive donations from Joey Scaparotti’s family and friends to honor Joey’s great grandfather Enrico Scaparotti.  November is also shaping up to be a great month for fundraising with events being held in California, Texas, and Alabama.  In the new year, corporate matches for the fundraising this last quarter will start arriving in 2017.

Cure GM1 and supporters continue fundraising in order to be able to cover the costs of the IV gene therapy clinical trial.  We can not rest until the clinical trial is actually initiated.  Even then, we should start thinking about the costs beyond the first phase I/II clinical trial and what steps will be needed following that trial.   Furthermore, in an ideal world, Cure GM1 would have multiple programs with different approaches, but at this time, it’s not possible financially.

In other words, we still need your help! 

As cited last month, there was a delay in the submission of the Pre-IND.  We are still working with the team to submit the first document and we hope that will go out very soon.  Stay tuned!

You’re Invited!

Berkeley, CA December 18th, 2016 11:30am-2:30pm

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If you are in the Berkeley, CA area, please consider joining us for our holiday tea for our last fundraiser of 2016.  It’s going to be lots of fun!

Cure GM1 2016 Triple Play Drive

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As we head into 2017, don’t miss this amazing opportunity to close out 2016 strongly by participating in our Triple Play drive which will end on Dec. 1, 2016.  The first $7500 in donations will be tripled.  To learn more about this campaign, you can read this post.

There is so much more to say!

A lot is going on and Cure GM1 continues to gain momentum.  Please follow us on Facebook where there are many, many updates.  And please help us make this cure which is waiting in the wings, a true reality!

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Nov. 2016 Cure GM1 Update
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