KFACC Summer Connections

Kids For A Cure Club Summer Newsletter

I am excited to introduce myself as a new volunteer with ASAP and that I will be chairing the Kids For A Cure Club. I live in Kansas with my husband, Kevin, and our four children: Christian (16), Julianne (13), Megan (11), and Laci (7). I have been a stay at home wife and mother since I was diagnosed in July 2011 with syringomyelia/ syringohydromyelia. My syrinx was from C4 to T10. I had surgery to place a shunt at C4-C5 in August 2011. I still have a syrinx in my cervical spine that may never go away. I have (mostly) learned to live with SM and hope to help others do the same. I chose to work with the Kids Club because I cannot imagine any child having to grow up with the chronic pain, that SM, CM and related disorders causes, because, even as an adult, it can be quite difficult.

I would like to do things that allow the children to be creative and maybe even choose some of their own activities. Something that I would love to do first is to have each child write a letter to me about themselves. Of course, this is optional but, I would reward each child for their efforts in letting me get to know them. I would love to know each of their stories, what is their illness and how they have learned to cope, what do they want to be when they grow up, hobbies, likes/dislikes, what they do for fun, favorite foods, movies, pets, favorite color, talk about the conference (if they attended) and what they liked best/least, did they meet any new friends, what did they learn…etc…whatever the children feel like sharing about themselves. Just a page or two (more if needed is great too!). I think it would be great if a picture of the child could be included with their letter. I really want to know them so I can do a good job for them. You can send them directly to my email address below or mail them to the office and they will forward them to me. ASAP, PO Box 1586, Longview, TX. 75606-1586.
Some of my other plans include a poetry contest, short story contest, and an ASAP poster contest. I have a few ideas for fundraisers and possible donations.

Since I am new to ASAP, I would like for everyone to know that I am open to suggestions or ideas that may change/ improve my own ideas. This is an amazing cause and it is so important that it be performed as a group effort. Please feel free to contact me with questions, ideas, suggestions, or if you need help with a project.

I am excited and proud to be a volunteer with ASAP and I look forward to working with everyone to improve the daily lives of all those affected while we are in search of a cure.

((Gentle Hugs)),

Monica Reents
ASAP Kids Club Chair

Click here to view the KIDS For A Cure Club Newsletter

For more information about the KIDS For A Cure Club click here.

Swing For The Cure 2013

Swing Fore the Cure
Charity Golf Tournament

Help raise awareness about Chiari malformation and syringomyelia while enjoying a round of golf at the prestigious Edgewood Golf Club.

Event Host: Melissa Sanders

Date: June 21, 2013

Place: Edgewood Golf Club, 16497 Kennedy Road, Auburn, Illinois

Time: Registration – 12:00 noon
Shotgun Start / 4 person scramble – 1:00 PM
Open Bar – 5:30 – 6:30 PM
Dinner / awards ceremony / silent auction – 6:30 PM

Cost: $90 per person – includes golf, cart, lunch, dinner, 3 on course beverages, open bar following golf, tee gifts/prizes and use of practice range.

Click here to download registration/sponsor brochure.

Become an ASAP Member

Membership in the American Syringomyelia & Chiari Alliance Project is free. Request a free information package and sign-up for the newsletter. That’s all it takes. Not sure if you want to be a member? Just request a free information package. You will receive it in the mail. Once you read about the organization and what we do and decide you want to be a part of our cause, return the membership form.

Children with CM/SM

Over the years I have often been told by adults that they did not realize daily headaches were abnormal. They were hesitant to share their symptoms with others for fear of being different or causing their parents anxiety. For most children it is important to conform and they may deny early warning signs.


Recycling is a requirement in many cities. But have you ever considered recycling unused medication or old medical equipment? We know that we should not keep medication around that we no longer use. But instead of flushing it down the toilet where it could contaminate the water system, consider recycling. Many relief organization collect and ship medication and medical supplies overseas. Other organization distribute medication to those in need in the US.

Chiari & Syringomyelia

Have you ever wondered why Chiari is capitalized and syringomyelia is not? It is not grammatically correct to capitalize the names of disorders or diseases. However Chiari malformation was named after a researcher which is why it is capitalized. Professor Chiari first described the abnormality around 1890.