Monday, May 12, 2008

May is ALS Awareness Month- at least in Florida

The ALS Association Florida Chapter

Florida Cabinet Joins the House and Senate in Declaring May to be “ALS Awareness Month”

The ALS Association Florida Chapter is celebrating another advocacy success. The Florida Cabinet soon plans to echo the actions of the House and Senate in proclaiming May to be “ALS Awareness Month.”

Governor Charlie Crist, along with Florida Cabinet members Bill McCollum, Alex Sink, and Charles Bronson, will make the proclamation in a meeting scheduled for Tuesday, May 13 in Talahassee. Association supporters, patients, and caregivers are welcome to attend the short ceremony. Please meet in front of the cabinet meeting room in the Capitol Building no later than 8:45am.

The resolution will dedicate the month of May to educate the public about the devastating effects of Lou Gehrig’s Disease. Cabinet members hope their efforts will aid the fight against ALS, while supporting patient care and biomedical research.

“This resolution is the culmination of a six week campaign. For the first time, ALS will achieve recognition across the entire state and gain distinction in the minds of state legislators,” Dara Alexander, ALS Association Florida Chapter President, said.

The ALS Association thanks Attorney General Bill McCollum for his support of this resolution and ALS Advocate Ed Kourt for his efforts in meeting with state leaders. As a result of this resolution, we anticipate great success in educating the public, increasing funds for research and patient care, and ultimately taking another big step toward making ALS a disease of the past.

3 comments:

Anonymous said...

Nicely done, Floridians!

I drove through Pennsylvania over the weekend. All of the lighted signboards on the Interstates said that it is Motorcycle Safety Awareness Month.

Somebody took motorcycle awareness to the right people in Pennsylvania government to get their message out. Cost: next-to-nothing. Benefit: motorcycle safety message to thousands of drivers.

How about ALS Awareness on every major hospital's and pharmaceutical company's internal electronic bulletin board? How about ALS Awareness in every university's student press. How about ALS Awareness on NBA playoff scoreboards, baseball scoreboards, etc? How about ALS Awareness on every Walgreen's cash register receipt? How about ALS Awareness on every healthcare professional's paycheck message? How about ALS Awareness on Starbuck's napkins?

Anonymous said...

Help! I'm helping a friend look for resources to help in the emotional/physical care and financial aspect of her mother's diagnosis made just a week ago. There seem to be so little resources available and the hospital/doctors are not in the least helpful. She has lost her insurance unexpectedly today and her home nurse made her last visit because of this. She has a feeding tube of which she cannot manage alone. We are in Ohio. Do you have any suggestions?

Tami
North Canton, OH
jtprimack@neo.rr.com

ALS Grumpy said...

Tsmi,

Being a friend at this time is extremely important. Good for you.

I would suggest your friend contact the local MDA or ALS Association offices, one or the other should be available fairly close. They are the angels that those of us with ALS count upon to keep us headed in the right direction. My wife, my caregiver, and I have found our local ALS Association chapter a vital life line as we go through the process of dealing with the progression of the disease.

I have also found two very valuable on line resources; the first is the Yahoo Group, Living with ALS, and the second is the patientslikeme.com where there is a database of patients living with ALS and the therapies being used by the patients and a very active forum.

Keep close to your friend, she and her mom will need all the support they can get.