Hope Renewed

It happens every year.  Attending an ASAP Chiari & Syringomyelia Conference renews the spirit and breathes new hope into what seems like hopeless situations.  This year was no exception.

My daughter just celebrated her sweet sixteenth birthday. All she wanted was to attend the conference- her one chance to see and talk with other kids who face the same challenges she does.  So I packed her up and brought her to Austin, TX.  No small feat since she is home bound at this point.  For the past several months she has spent day after day lying in bed, unable to sit up for more than an hour at a time before the pain gets unbearable.

She wasn’t able to participate in most of the youth activities- her pain levels kept her in the hotel room most of the time. But still she said it was great, and can’t wait to go again.  And mom?  Well, I left with all kinds of great information that is going to help me get my daughter functioning again.  For the first time in months, I feel hopeful and confident that help is out there.  Now I know what to look for and where to go. 

My daughter will be up and functioning again. She will lead a fulfilling and productive life.

Maybe you are feeling as downhearted as I was when I stepped off the plane in Austin. If I can share one thought with you- it’s this: don’t give up.  Stay connected to ASAP and keep reading and searching and asking questions.  Together we can do this! We can improve lives and find the help and hope we need.

Join the Walk for a Cure!

Do you live in the Maryland, Delaware, and Washington, DC area? Are you looking for a way to get involved in the cause?  Then come out and Walk for a Cure on November 6, 2010.  “Trek with the Turmelle Boys” to raise awareness for Chiari and syringomyelia throughout our communities. Please join us if you can on November 6, 2010 at Mariner Point Park, Joppa, MD from 10:00 am until 2:00 pm.

Your participation will help fund vital programs and research for the estimated one million American men, women and children affected by Chiari malformations and syringomyelia.   Participation is as easy as 1, 2, 3!

1.  Go to www.firstgiving.com/cmsm and click Register for an Event.  Choose Walk for a Cure and click register online. 

2.  Create your free fundraising page and start getting sponsors.  Personalize your page with your own pictures and a personal story that tells why you are participating in the event, and what a cure means to you. 

 3. Set a fundraising goal, and send the link to your friends and family and ask them to sponsor you for the walk.  Every walker raising over $30 will receive a t-shirt.

Tips for success:  

Set a high goal. National averages for walk sponsors using a FirstGiving fundraising page range from $150 to $2,000.  Don’t be shy about your goal.  Just think about the tremendous impact you can make.  

You can raise even more money for the cause by creating or joining a team.  Recruit 5-10 people, and set a team goal such as $5,000.  All team members work together to reach the goal by sending out the link to their friends and family.

Post your fundraising page to your facebook page.  Spread the word about what you are doing to help the cause and see what a difference you can make. 

Send out an email when you reach the halfway mark.  Keep your page circulating and remind your friends you are counting on their support.

Invite friends and family to come out and enjoy the festivities.  On site Registration is at 10:00 am and walk begins at 10:30 am.   

Mariner Point Park
100 Kearney Drive
Joppatowne, MD 21085

Still have questions? Email Matt at Matt_Turmelle@ASAP.org