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

Register now

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
2450 El Camino Real, Suite 101
Palo Alto, CA 94306

650–532-3274
info@buildingstrength.org

Apply for RESEARCH GRANT

AFBS is excited to announce the "Building Muscle Initiative" Research Grant AFBS will fund up to $1 Million towards this grant to continue our mission to find treatments for NM. The goal of this grant is to advance our understanding of the pathogenesis of NM in order to design and optimize treatment and management strategies.

To apply for the Research Grant please click here for further information. Application Deadline The deadline for submission is June 1, 2014 at 5:00 P.M. Pacific Standard Time.

 

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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