CONGENITAL MUSCULAR DYSTROPHY ADVOCACY
House of Representatives
Ted Lieu
Kevin McCarthy
Adam Schiff
Tom McClintock
Julia Brownley
Devin Nunez
John Garamendi
Jon Peterson
My youngest grandson Jon was born with a defective LAMA-2 gene and therefore can’t produce enough Merosin to build muscle tissue. Jon will never have the muscle strength to walk or run. He is 3 years old now and is already in a wheelchair, but his future may be brighter if current and future research can be supported with more funding. He is lucky to be surrounded by a strong family network of loving parents, siblings, doting grandparents and others who help the family both financially and with continuous hours of childcare. After six years of Coast Guard service, Dad is studying for his DPT degree at USC. Mom has become a strong advocate for Jon with California Children’s Services and other regional and local organizations. Hope for a cure is the ultimate goal for Jon. Just behind that comes access to resources that keep the families quality of life exceptional, as they continue their journey down this challenging path.
Jon is impacted by these federal services
Karen Baldwin
(Grandma)
(909) 227-9821
karen92317@gmail.com
Find an outline shape of your state and put it here (replace this state with your own). Place the star/marker where you live. Goal is to show CMD individuals live right in the districts of the elected officials to whom we are advocating.
�INSERT PHOTO OF AFFECTED INDIVIDUAL HERE
Senators�Dianne Feinstein
Kamala Harris
List all reps for your state….you meet with reps on a team of other individuals from your state, who could be in another district. At all meetings, you’ll have the opportunity to share your story, even if just in written format. Listing all reps is inclusive of the entire state.
Congenital Muscular Dystrophy (CMD) is among of >7,000 rare diseases in which there is no cure�
Cure CMD, a 501(c)(3) non-profit organization, was established in 2008 with a mission to advance research for treatments and a cure for Congenital Muscular Dystrophy. ��We work to improve the lives of those living with CMD through engagement and support of our community, and collaborate with dedicated patient, family, researcher, clinician, industry and government advocates worldwide to achieve our mission.
With generous support from the community we have:�