Saturday, May 18, 2013 is Friedreich's Ataxia Awareness Day

Today, Saturday, May 18, 2013 is Friedreich's Ataxia Awareness Day for our brothers and sisters across the big pond in the USA. Please take a few minutes of your time to read up on this and help us to Rise Awareness for Friedreich's Ataxia. Thank you.

Today, Saturday, May 18, 2013 is Friedreich's Ataxia Awareness Day, which is recognized each

year on the third Saturday in May. Beginning a dozen years ago, various members of the U.S.

Congress and various state legislatures have proclaimed and marked the

third Saturday in May as

the day on which we annually recognize the increasing importance of building awareness and

understanding of Friedreich's ataxia and committing ourselves to treating and curing this disease.

Friedreich's ataxia is a rare, life

-

sho

rtening neuromuscular disorder that is usually diagnosed in

childhood. It is one of the 7,000 rare diseases that afflict a total of about 30 million Americans.

Friedreich's ataxia causes muscle weakness and loss of coordination in the arms and legs;

impair

ment of vision, hearing and speech; scoliosis, diabetes; and a life

-

threatening heart

condition. Most patients need a wheelchair full

-

time by their twenties.

There is currently no

treatment for this devastati

ng disorder.

In those early years when Friedreich's Ataxia Awareness Day was first proclaimed, far fewer

people were aware of the disorder, much less was known about it and hope was hard to come by.

Now, although there is still no treatment available at

this time, Friedreich's ataxia patients and

families have more and more reason for real hope and even confidence. An extraordinary

explosion of research findings followed the identification of the Friedreich's ataxia gene in 1996

and, since that discovery,

research scientists have learned a great deal about the disorder. We

now know what defects in the gene cause the disease, what protein the gene produces, what that

protein is supposed to accomplish, and why a shortage of the protein results in the cell de

ath that

leads to the disease symptoms. Scientific investigators are increasingly optimistic that they are

drawing very close to developing effective treatments.

In the United States and around the world, clinical trials in Friedreich’s ataxia are being

conducted on drugs that hold real promise. Intensifying collaboration among scientists and

medical care professionals, patient

-

advocacy organizations, government agencies and the

pharmaceutical industry provides powerful evidence of the tremendous progre

ss being made and

the growing hope, confidence and determination to conquer Friedreich's ataxia. There is a

growing conviction that treatments can and will be developed for this disease and that the

resulting insights will be broadly applicable across a w

ide range of rare and common

neurological disorders.

As in each of the last dozen years, multiple events will be held in communities across our

country this month to increase public awareness of Friedreich's ataxia and to raise the funds

needed to suppor

t the research that is so promising of effective treatments for this disorder. We

ask you to join the Friedreich's Ataxia Research Alliance (FARA), Friedreich's ataxia patients

and families across the country and around the world in recognizing May 18, 20

13, as

Friedreich's Ataxia Awareness Day and to show our concern for all those families affected by

this disorder and to express our support and encouragement for their efforts to achieve treatments

and a cure.

Thank you very much.

Now this video is from FARA its a few years old but its very moving and its powerful i am 25 and it  brought tears to my eyes the first time i saw it. http://www.youtube.com/watch?v=dBKEz952RY4 please watch it and check out my other stories on my blog.

Many thanks Justin