Friday, February 27, 2009

Baby Eli Day: March 7th


I was looking at the ants in my yard yesterday and seeing the huge mounds they manage to create by working together. Why can't we do that too?

On March 7th, please consider making a small donation to SMA research by sacrificing something in your life that day. Maybe instead of grabbing a coffee at Starbucks, you brew it at home and send the $5; or maybe you and your family stay home for dinner and donate the $50 you would have spent. It could even be something as small as not picking up that pack of gum at the checkout counter and donating that $1 you would have spent. Many people doing small things can make a difference!

Please consider doing this for Eli and all the other kids who are no longer with us because the research has not been funded enough to find a cure.

Thank you.
Rita & Jason

Here is the link of different ways to donate:
http://www.fightsma.org/index.php?make_a_contribution

If you would like to make a contribution by check, please make it payable to "FightSMA" and mail it to: FightSMA, 1807 Libbie Avenue,Suite 104, Richmond, Virginia 23226.
On a separate sheet of paper, please include:
Your Full Name
Mailing Address
Email Address
Phone Number
How you learned about FightSMA
If the gift is in honor or memory of anyone and if so, the contact information of the person who should be notified of the gift

Another option is a donation the wonderful organization set up by my new friend Laurie who also lost her little man to SMA. She has been such a help for me during all of this, so I would love for some of the donations to go to Marshall's Miles.

http://www.marshallpotter.com/donations.php

Marshall's Miles
c/o Southbridge Savings Bank
82 Worcester Road
Webster, MA 01570

Please pass this on to as many people as you can... Send it to your friends on FB, put up a flyer, or just send an email. This is so important to me and I appreciate anyone willing to help out.

You can also go sign the petition to cure SMA if you just want to do something simple...
http://www.petitiontocuresma.com/

Spinal Muscular Atrophy is an inherited genetic disease that results in loss of nerves in the spinal cord and weakness of the muscles connected with those nerves.
SMA is the #1 genetic killer of children under the age of 2.
SMA is estimated to occur in nearly 1 out of every 6,000 births.
The gene mutation that causes SMA is carried by 1 in every 40 people or nearly 7.5 million Americans.
There is currently no treatment and no cure, but the National Institutes of Health (NIH) and the National Institute of Neurological Disorders and Stroke (NINDS)have selected SMA as the disease closest to treatment of more than 600 neurological disorders.
Researchers estimate that we are as close as only a few years away from finding a treatment and/or cure.

http://www.facebook.com/event.php?eid=75496011507

4 comments:

Melanee said...

We're having a garage sale the 6th and 7th. We'll donate 10% of what we bring in that day.

Anonymous said...

What a great idea! I will spread the word to friends and family.
Brandi

KDG said...

Just a quick note of a hug for you. I am a fellow August Honey Bee mom and have been quietly following your journey. I just wanted you to know that I think your strength is stunning and admirable. I think of you often and want to thank you because on days when I struggle I visit your blog and your character and love for your beautiful son Eli give me strength. My heart is with you.

Anonymous said...

Is this still up on facebook? I could not find the event!