Government Support

To maintain the momentum of research and treatment progress, it is crucial for us to work with our government to promote legislative support of our mission.

Senator Dick Durbin (D-IL), in a CBS News interview described our devotion to Max as
“ a profile in courage.”

Letter from Sentator Durbin

Our Mission goes to Capitol Hill

Making the case for increased Federal funding allotted to rare disease research.

On February 11, 2004 we made the trip to Washington DC–joining associates in our quest to cure Canavan Disease, to appear before Federal lawmakers.

In a two-day span of time, we met with members of the House and Senate appropriation and oversight committees, along with the USDHHS, NICHHD, NIH, ORD and NINDS. These exhaustive efforts reinforced existing relationships and cultivated new and helpful contacts, ensuring Canavan disease remains on the Washington radar.

We impressed upon these legislators, the value of rare disease research potentially benefiting millions suffering from more common illnesses. MS, Parkinsons, ALS, and Alzheimer’s, are few of many degenerative brain diseases that can benefit from the study of Canavan. It is our aim to work with policymakers to create separate funding for “ultra-rare” Mendelian disorders (Mendelian, meaning disorders caused by a single mutated gene), affecting less than 500 people. Diseases caused by a single mutated gene can offer insight into other genetic diseases where several genes are involved.

Although our private fundraising efforts are tireless, we need to continue pressing our legislators for support. The astounding gains gene therapy has given our children are testament to what is possible.