PLS Awareness Month

Write to your Congressman today - 100 Representatives need to support the Resolution

52 Cosponsors* to date, 48 more are needed

California Congressman Joe Baca (D-CA) introduced legislation to bring greater awareness to Primary Lateral Sclerosis, or PLS. The resolution encourages Americans to recognize February, in conjunction with Black History Month, as Hardy Brown - Primary Lateral Sclerosis Awareness Month. The awareness month would be named in honor of one Rep. Baca's constituents and co-publisher of the Black Voice News, Hardy Brown - who is afflicted with PLS. �I introduced this legislation because many Americans are unaware of the severe nature of PLS,� said Rep. Baca. �We need to recognize the courage of the brave men and women who endure through this condition, while at the same time work to encourage greater awareness and better funding for research and treatments.� Please contact your Congressional Representative. Ask him or her to become a cosponsor to this important bill, H.RES.896.
* Go to http://www.thomas.gov/cgi-bin/bdquery/z?d110:HE00896:@@@P for the list of cosponsors.

8. Below is the suggested email. Feel free to add any personal touches. Then cut and paste it into the text box.

I am writing to request that you cosponsor H.Res.896, the Hardy Brown PLS Awareness Month Act, introduced by Congressman Joe Baca (D-CA). This bi-partisan resolution is urgently needed to raise awareness of the rare neuromuscular disorder Primary Lateral Sclerosis (PLS).

PLS is characterized by progressive muscle spasticity and weakness in the voluntary muscles. It is a particularly cruel disease that destroys a person�s ability to control normal muscle movements such as those required to walk and talk. Symptoms may include difficulty with balance, weakness and stiffness in the legs, and clumsiness. Other symptoms may include spasticity (sudden, involuntary muscle spasms) in the hands, feet, or legs; foot dragging, and speech problems due to involvement of the facial muscles. More information can be found on the Spastic Paraplegia Foundation website - http://www.sp-foundation.org/pls.htm.

Currently there is no cure for PLS or a way to slow or reverse the progressive disability of this disorder. As is the case with many rare diseases, they are often overlooked in the media and by the medical and research communities. And, with no known public figure/celebrity spokesperson who is afflicted with this disease, the people suffering from PLS have even less of a public platform. Luckily, this began to change with the establishment of the Spastic Paraplegia Foundation (SPF) in 2002. Thanks to SPF�s all-volunteer efforts, in five short years, over $1.5 million has been raised to support critical research on PLS, as well as another neuromuscular disorder with similar symptoms, Hereditary Spastic Paraplegia (HSP).

Establishing February as PLS Awareness Month will greatly facilitate our ability to raise funds to support medical research.

I urge you to become a cosponsor of this important bi-partisan resolution. Please contact Brenda Villanueva in Congressman Joe Baca's office (202-225-6161) to become a cosponsor of the Hardy Brown PLS Awareness Month Act (H.Res.896).

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