Write a Letter

Start writing! Write to your state’s Congressional leaders and legislators and ask for their support of the MODDERN CURES ACT http://www.puttingpatientsfirst.net/moddern/.

“More than 133 million Americans – over 40% of the U.S. population – live with a long-term disease or disability. But for some people there are no treatments and there are no cures. Most treatments that do exist work only for 50 to 75 percent of the patients who currently use them. Only 1% of marketed drugs have a companion diagnostic test to determine which patients would benefit from a specific treatment.”

Request additional funding for the National ALS Registry as well! The registry is pertinent to understanding all aspects of ALS and what connects patients with ALS (PALS) across the country. This collection of patient data could be instrumental in solving the mystery of ALS and securing a cure.

Another important objective in the road to a cure is the ALS Research Program (ALSRP) at the Department of Defense. However, that funding is being threatened and the government is proposing to reduce that budget by millions of dollars.

Please write to save ALSRP!

ALS Association Events

Upcoming ALS Association events to check out!

5/12/2012 - Seaside Board…Walk to Defeat ALS® Hiering Avenue and the Boardwalk, Seaside Heights, NJ

5/19/2012 - Bloomsburg, Jorge’sWalk to Defeat ALS® Bloomsburg Town Park Bloomsburg, PA

5/23/2012 - Lakewood BlueClaws Celebrity Waiter Event First Energy Park Lakewood, NJ

6/2/2012 - Hershey Walk to Defeat ALS® Penn State Milton S. Hershey Medical Center Hershey, PA

6/16/2012 - ALS Express Bike Event Morey’s Piers Wildwood, NJ

7/26/2012 - Phillies Phestival Citizens Bank Park Philadelphia, PA

Hello sunshine!

With the weather being so inviting, I know many of us find it difficult to crop indoors. Neigh I say, I have been busy organizing our raffle items and creating cute goodies for our crop in September. I was inspired by friends who have been helping me spread the word about our crop. These goodies will be posted soon on the site.

Enjoy the Sunshine!!

Registration has started for September Crop!!!

Hooray!!! We have received our first 2 registrations for the charity crop, very exciting!!!

Thank you to all who are spreading the word. Looking forward to seeing you all again in the fall!

ALS Registration Form for September Crop

Just realized the registration form does not have an address to mail it to.

The registration form will be updated shortly.

New Motto - Not Impossible

Today we were watching the NCAA Big Ten Basketball Tournament and this amazing commercial caught our attention. It showed strives in technological methods to allow those individuals living with ALS still being able to communicate even when they no longer had the ability to speak. Check out the link below and be amazed by the Eye Writer!
 http://notimpossiblefoundation.org/

Spread the Word - No White Flags

On Friday March 2nd, my mother in-law Amalia would have celebrated her birthday. It was a bitter sweet day for the Ayalas. We are only 6 months or so until our charity crop in September. I watched the Superbowl and saw the story about Steve Gleason and Team Gleason. He is a great inspiration and I would like to share his story. Check out Team Gleason's site for more information about what strives they are making for people who are living with ALS. http://www.teamgleason.org/


Also, I will be sending out postcards to those past attendees with information about the September crop. Keep an eye out for them and remember you can register early for the crop. Last year we sold out of spots for Saturday.

No White Flags!