October 2016 Cure GM1 Update

What an Amazing Month!

The Cure GM1 Tongue Twister Challenge was launched and we’ve had an amazing response from many friends and supporters spreading awareness.    Please see the video and page about the challenge.  The challenge is going on in full force now.  Please join in! On our Facebook page, you can see a bunch of videos. Each video has its own unique story.  Amazingly, we can not keep up with all of the videos!

Here’s the page: Cure GM1 Tongue Twister Challenge

October Fundraising Update – Incredible!

Truly, September and October so far have been the best months of 2016 for our small and mighty nonprofit.  We are truly grateful to the Heatherly and Bragg families and all GM1 families who have joined in by supporting our mission to cure GM1 Gangliosidosis.  This is the worst possible way to make new friends, i.e., we wish no one had to suffer from this awful condition.  Still, there are some truly wonderful people who are now part of our Cure GM1 community whom we would never have met otherwise.

We’re united in this fight for a cure!  Thank you to all the amazing donors and supporters for making September a HUGE month with $128,000 in donations!  There are also many pending corporate matches that will roll in very soon.  The full proceeds from events will roll in as well.

Prayers for Porter

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Prayers for Porter held a beautiful event for Porter’s 4th Birthday in Alabama.  This was the Heatherly family’s second annual birthday fundraiser.  A ton of press also featured Porter’s story.  How wonderful to see continued support this year!

A Cure for Clara

A Cure for Clara is in full swing.  Little sweet Clara was diagnosed in September 2016 with late infantile GM1.  Her family and parents jumped right into action and they are truly helping to advance our gene therapy program with an incredible fundraising campaign.

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See A Cure for Clara here! https://www.crowdrise.com/cure-gm1-for-clara

Upcoming Fundraisers

Run to Help Cure GM1

Participate Virtually, Purchase a Running Shirt, Sign Up!

No order minimums for this t-shirt campaign! Join us for the Berkeley Half Marathon! Buy a shirt to help us raise money to get GM1 Gangliosidosis gene therapy to clinical trials!
Multiple male and female styles available!
T-shirts: https://represent.com/run-represent-hope-help-cure-gm1

To Donate, to join the team,  and to find more information about the race team, check out CrowdRise! https://www.crowdrise.com/CureGM1BerkeleyHalfTeam

To participate virtually, just join the Crowd Rise campaign, choose a path to run or walk and invite your friends to support you!

The Berkeley Half Marathon will be taking place on November 20 and some awesome runners will be using it as an opportunity to fundraise for this amazing cause to help save children’s lives.

Family Holiday Tea at the Berkeley City Club 12/18 11:30am-2:30pm

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If you are in Northern CA, we have two upcoming events here locally in the East Bay!

Save the date for our first ever Family Holiday Tea!   We want to emphasize that children are invited and this is a family friendly event. The tea will take place at the Berkeley City Club and it’s a family event with Santa, music, delicious food, face painting, balloons, and a silent auction.  We’ll send out the invitations soon very shortly for early birds!

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Sponsors Needed

If you are interested in being a sponsor for the event or if you know someone who might be willing to be a sponsor, please let us know.

Gene Therapy Update

A short delay in actually sending the first document called the Pre-IND has occurred.   The hope is to get the Pre-IND really, really, truly in the mail in November!  Fingers crossed!  We can not emphasize enough how truly complicated and convoluted this process is for all parties involved.

We are sharing this information openly and honestly because we feel our donors, supporters, and families deserve to understand the truth.

The project is still on track for 2017, but there are many, many steps and pieces that will need to fall into place to meet our goal.

As you know, one of the very most important pieces is funding.  We are still fundraising because the cure is not here.   Those affected by GM1 experience the full brunt of there being no treatment.   The funds needed now are for manufacturing and running the clinical trial.  The budget is very lean and this is currently a tight situation financially.  We’d like to change that and to be able to have more flexibility.

To make a trial happen and to navigate all the complexity, we still need your support.

This project is for the world and for the entire GM1 community.  Frankly, it’s also for all humanity and could advance medicine.  Please make a contribution today to this incredibly worthy cause!

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