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B Fugere's Fundraiser:

BRAVE BLAKE & BRETT SUPPORTING CUREBATTEN & THE GRAY ACADEMY

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BENEFITING: Giving Back Fund

ORGANIZER: Bryan

B Fugere

THE STORY:

Beth Fugere wrote -

Double Summit Climb: Being Brave is going to new heights!

The Inspiration: Close friends of the Gray family have hiked to the summit of Grays Peak for the last two years in honor of raising awareness for Batten disease. What a great inspiration!

The Challenge: Essemble a team to join the existing group to climb to the summit of Grays Peak and then also climb Torreys Peak in a Double Summit Challenge. 

The Goals:

  1. Raise $25,000 for the foundation's work to advance the research for the cure for all children.
  2. Bring our 2x3 'Be Brave' banner to the peaks and show that awareness to Batten and other rare diseases need to be carried far, wide, and high! It is time to bring rare to AWARE!

The Climb Date: August 19th, 2017

Donations automatically benefit the Charlotte & Gwenyth Gray Foundation to Cure Batten Disease @ the Giving Back Fund, Federal 501c3 in Blake & Brett's honor.

THE CHARLOTTE AND GWENYTH GRAY FOUNDATION TO CURE BATTEN DISEASE IS A PROJECT OF THE GIVING BACK FUND, INC. (FEDERAL TAX ID 04-3367888), A MASSACHUSETTS NONPROFIT CORPORATION WITH FEDERAL TAX EXEMPT STATUS AS A PUBLIC CHARITY UNDER SECTION 501(C)(3).

 

 

Bryan Fugere wrote -

Raise awareness and advance the research for the cure! We are going to pay it forward for all children! JOIN US!

Donations automatically benefit the Charlotte & Gwenyth Gray Foundation to Cure Batten Disease @ the Giving Back Fund, Federal 501c3 in Blake & Brett's honor. Every dollar matters, every moment matters! There is HOPE and we cannot do this without you!

Batten CLN6 is a disease that leaves children blind, immobile and is terminal between the ages of 6-12. The Charlotte & Gwenyth Gray Foundation, www.curebatten.org, has initiated and funded an FDA approved first of its kind gene therapy clinical trial for children with CLN6. The trial employs the AAV9 virus to deliver a replacement CLN6 gene to the brain. The replacement gene overrides the functionality of the mutated gene, allowing cells to function as normal; purging built up lipofuscin wastes (cell death cause) and restores balance in the brain. 

In addition to gene therapy research, small molecule therapy and stem cell research are aggressively underway to end CLN6 and bring the much needed awareness to the overall Batten community that action must be taken to help ALL CHILDREN with ALL VARIANT levels of Battens. No parent should hear there is no treatment, there is no cure. Together we can end this. Be part of the CURE TODAY and the FUTURE of MEDICINE TOMORROW

 

Blake & Brett's Story: After several months of misdiagnosis and unanswered questions our sweet Blake (5) was diagnosed with CLN6 in early November 2016. Blake is the 11th person in the world with the CLN6 variant. Immediately we had his baby brother Brett (1) tested and received the devastating news that he too has Batten CLN6. Brett is now the 12th person in the world with this variant. Blake was recently treated with the life saving gene therapy treatment funded by the foundation. All children need this treatment.

 

THE CHARLOTTE AND GWENYTH GRAY FOUNDATION TO CURE BATTEN DISEASE IS A PROJECT OF THE GIVING BACK FUND, INC. (FEDERAL TAX ID 04-3367888), A MASSACHUSETTS NONPROFIT CORPORATION WITH FEDERAL TAX EXEMPT STATUS AS A PUBLIC CHARITY UNDER SECTION 501(C)(3).

DONATE

To This Fundraiser

$6,700

MONEY RAISED
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  • B Fugere

    $25

  • Todd & Cayla Klusmann

    $100

  • Serrano Family

    $100

  • Grays Peak Climb- August 2017

    $6,475

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27% Raised of $25,000 Goal

Fundraise for this Campaign

The Team: $30,284 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

Bryan Fugere

Amount Raised

$23,584

 

3% Raised of $800,000 Goal

Fundraiser Title

B Fugere

Amount Raised

$6,700

 

27% Raised of $25,000 Goal

Donor Comments

Grays Peak Climb- August 2017

Grays Peak Climb- August 2017

DONATION: $6,475

1 week ago

Serrano Family

Serrano Family

DONATION: $100

11 months ago

Todd & Cayla Klusmann

Todd & Cayla Klusmann

DONATION: $100

1 year ago

B Fugere

B Fugere

DONATION: $25

In honor of my Brave Blake! Let's climb high sweet boy! 1 year ago