Assemblymember Miguel Santiago Introduces Resolution in Honor of Los Angeles Toddler

Thursday, September 21, 2017

ACR 138 Proclaims September as Leukodystrophy Awareness Month

(Sacramento, CA) – Last week Assemblymember Miguel Santiago (D-Los Angeles) introduced Assembly Concurrent Resolution 138 to proclaim September 2017 as Leukodystrophy Awareness Month, in honor of Eagle Rock toddler, Clara McClean, who was diagnosed this July. If ACR 138 passes, California would join a list of other local and national entities that similarly recognize September as Leukodystrophy Awareness Month in order to bring attention to the disease.

Leukodystrophy is an umbrella term for a group of rare genetic diseases that affect the brain, spinal cord, and often the peripheral nerves. There are various forms of the disease, which occur as often as one in every 7,700 births overall. Many forms of leukodystrophy are progressive, causing infants and children to eventually be robbed of their ability to walk, stand, breathe and swallow on their own. Often, children with leukodystrophy do not survive childhood.

“As a father to two young children, I have an immense amount of sympathy for the families across California that have had a loved one suffering with this disease. In the case of the McCleans, their daughter has a currently unidentified form of the disease, which makes the chances of finding effective treatment that much more difficult. This resolution will help bring much needed attention to the disease in the hopes of one day finding a cure.”

Since learning the devastating news, the parents of little Clara Mclean, Jessica Wethington McLean and Tom McLean, have scrambled to find resources to help their daughter. The McLeans have found inspiration in the work of numerous organizations and families advocating around rare diseases, including leukodystrophy.  Dean and Teryn Suhr, created the MLD Foundation after their daughter Lindy, another honoree of the Santiago resolution, was diagnosed with Metachromatic Leukodystrophy (MLD) three decades ago. 

“Statistically, we know leukodystrophy diseases are more common than ALS, the disease brought to public attention recently through the “Ice Bucket Challenge” on social media, but leukodystrophy is still a little known term in mainstream society. We need to do whatever we can to change that, and to advocate for rare disease research, screens, and cures,” said Suhr, who serves as the foundation president. Suhr also runs RarePolicy.us, advocating for local and national legislation around rare diseases and providing a tool for increasing awareness, education and engagement while linking citizens with legislators about rare disease issues. 

Assemblymember Santiago plans to bring this resolution before the Legislature for a vote when they reconvene in January.

Assemblymember Miguel Santiago is the Chair of the Assembly’s Communications and Conveyance Committee, and a member of both the Assembly Health Committee and the California Latino Legislative Caucus. He represents the 53rd District composed of the cities of Los Angeles, Huntington Park, and Vernon.

CONTACT: Jackie.Koenig@asm.ca.gov, (916) 319-2053