Chelsea’s Hope began in the fall of 2007 as a means to share our story about our daughter Chelsea and her diagnosis of Lafora disease. Feeling helpless, hopeless and alone is our sorrow we began to realize we could no longer continue to live under the black cloud of despair that was Lafora. We connected with the world’s leading experts in Lafora research and soon thereafter, through the power of the internet, began to find other Lafora families and encouraged them to join our cause of creating awareness, connection and raising money for research.
September 2009, Chelsea’s Hope filed for and became an IRS 501(c)3 non-profit organization. All donations are tax deductible to the extent permitted by law. Nonprofit Public Benefit California Corporation EIN: 27-1008382
Board of Directors
Linda Gerber
Executive Director, Co-Founder, Lafora Parent
Barbara Goldsmith
Co-Founder
K.T. Waxman, DNP, RN
President
Karen Moody
Vice President
Jeff Porter
Treasurer
Karen Moore
Secretary
Kim Rice, M.D.
Lafora Parent
Michelle Ferber
Legal Counsel
Mission Statement
The specific purpose of this corporation is to aid and assist the Lafora researchers by raising funds for research, treatment and cures for those affected by Lafora. In addition, our goal is to raise awareness about Lafora and to provide connection and assistance for families in the form of education, emotional and general support.
Another Perspective
Read another perspective of Lafora provided by co-founder, Barb Goldsmith. [Read more]
Inspirations
Read words of inspiration provided by Lafora families and friends. [Read more]