Our Mission is to find treatments for Nemaline Myopathy.

CONTACT US

Tax ID: 26–1761329

3825 El Camino Real
Palo Alto, CA 94306

650 / 532-3274

info@buildingstrength.org

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boy-flexing-muscles girl-holding-heart woman-smiling

THE ORGANIZATION

A Foundation Building Strength is a non–profit organization dedicated to finding treatments for Nemaline Myopathy.

Tax Information:

A Foundation Building Strength, Inc
A 501(c)(3) non–profit corporation
Tax ID number: 26–1761329

Contact Information:

Marc Guillet
3825 El Camino Real
Palo Alto, CA 94306

650–532-3274
info@buildingstrength.org

We Need Your Help with Fundraising Opportunities!

Recently, A Foundation Building Strength (AFBS) went to the global muscle disease scientific community to request proposals for new NM research. A total of nine proposals were received by AFBS in July 2014 requesting funding for new NM research development. The AFBS Board has met to discuss these proposals and will select the best proposal(s) and grant winner(s) to fund up to $1 Million dollars. The Board has committed to this significant funding in order to advance our understanding and develop treatments for NM. The winner(s) of this grant will be announced on August 1, 2014.

With nine new and exciting research proposals, AFBS needs help in reaching our funding goals to advance NM research. Ideally, AFBS would like to be able to fund every proposal we receive but to do so it requires donations to cover all of our researchers costs. This is where you can help!

AFBS needs help with fundraisers and/or is asking for personal donations if you would like to get involved. No donation amount or fundraiser is ever too small. Many NM families who have helped in the past found that once they got started, suddenly others from their circle joined and more was achieved than they initially thought was possible. A lemonade stand or bake sale can raise a few hundred dollars, community awareness, and is fun for the whole family to participate in.

If you are interested in how to get started with a fundraiser, feel free to reach out to us at info@buildingstrength.org and one of our staff members will get in touch with you to discuss how you can make an immediate impact and help you get started! Or, to make a contribution directly, please visit our online donation site HERE.

We know with your continued support and help we can reach our fundraising goal!

 

THE FOUNDERS

Dana and Marc Guillet, who live in Palo Alto, CA gave birth to their third child, Ava, after an uneventful full term pregnancy. With all normal pre-natal visits and amnio testing, their expectations were set for another easy delivery and a short trip home to share Ava with her siblings, Samantha and Andrew.

At birth, Ava had some obvious problems. Her hands and feet were mal-positioned and her cry was very weak. The doctors thought because she delivered quickly she would come around within several hours. Three weeks later in the neonatal intensive care unit, Marc and Dana were still learning how to care for their child that had no diagnosis.

Ava could not take milk on her own and on occasion would stop breathing in her sleep. Ava left the hospital with a tube passing from her nose to her stomach for feeding, monitors to tell the Guillets when she stopped breathing, and a suction machine to manage her saliva which she could not swallow.

At 7 months, Ava had a feeding tube placed directly through her stomach wall and a muscle biopsy confirming a diagnosis of Nemaline Myopathy.

Ava is currently walking, though she falls more than typical children. She needs assistance in climbing stairs and continues to be fed by a G-tube. She is taking small sips of water but is primarily fed by a pump with specialized formula.

She still requires on-going occupational, physical and swallowing therapy on a regular basis. She attends pre–school part–time and tries to keep us with her brother and sister.

Ava is beautiful, happy, bright and certainly tolerant after all of the different doctors and procedures that she has endured.

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