The Organization

A Foundation Building Strength is a non-profit organization striving to stimulate, advance and move forward the science of treating myopathies while supporting the community of Nemaline Myopathy with information, resources and solutions.

The foundation's primary goals are to:

1. Fund and stimulate research into treatment and a potential cure for NM.

2. Partner with companies to provide necessary medical equipment to those in need or when health insurance will not cover related expenses.

3. Create a panel of experts to answer medical and developmental questions to parents and those affected by Nemaline Myopathy.

4. Provide resources to bring NM communities together for bi-annual conferences.

5. Raise awareness about this rare disease.

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

650-320-8000
info@buildingstrength.org

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.

Today, Ava still cannot swallow well enough to nourish herself.  She is 16 months old and is not yet able to walk.  According to general myopathy research, if a child can walk by 18 months, this is a long term predictor of survival.  The Guillets are working hard to achieve this goal.

Since leaving the hospital, Ava has received: physical therapy once a week, occupational therapy for swallowing two times a week, and swim therapy. Ava has also attended music class and classes for early development. 

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

For the list of the Board of Directors and the panel of advisors please click here