Special thanks to:
Beth Brixius – Syringo-My-What? Steps Across the States – April 5 in Great Falls, Virginia
Heather Leitner – 1st Annual Walk & Roll for a Cure 5k – April 12 in Hurricane, Utah
Tabitha Peters – Syringo 5k Walk & Roll and Kids Lollipop Walk & Roll – April 19 in Peru, Illinois
Yogi Borys – 1st Annual Yogi’s Walk & Roll – April 26 in Geneva, New York
Lauri Edwards & Charyl Turner – Syringo-My-What? Steps Across the States – April 26 in Tulsa, Oklahoma
LeeAnn Clutter – Syringo-My-What? Steps Across the States – April 26 in Kingston, Oklahoma
Margaret Leisenheimer – Syringo-My-What? Steps Across the States – April 27 in Middle Village, New York “The event was great………a little chilly…..but great! LOL Margaret did a really good job! She’s so young! I was expecting a full grown………..and got this effervescent teen! She’s adorable. She made an impression on my kids (23 and 20) and many of my entourage. They are used to seeing me with all my aches and pains and issues. When they saw Margaret, all everyone kept saying is “……..but she’s so young.” Talk about needing awareness! JS”
Laurie Swihart and Cathy Tufts – 3rd Annual ASAP’s Sugar Land Texas Walk and Roll for a Cure – May 3 in Sugar Land, Texas
Rain Deskin – Rain’s Day 1k Walk & Roll for Syringo & Chiari – May 17 in Christiansburg, Virginia
Tutrow family – 5th Annual ASAP Walk & Roll for a Cure – May 24 in Greenfield, Indiana
Gina Huffman – 1st Annual Walk & Roll Lewis Center Ohio – May 31 in Lewis Center, Ohio
Cat Becker – ASAP’s Media, PA Together We Can Walk & Roll for a Cure – May 31 in Media, Pennsylvania
Anna Tannreuther – 3rd Annual Clyde’s Chiari Awareness Walk – June 7 in Middletown, Ohio
Sunshine Matthews – Sunshine’s Charity Run – June 27-29 in Ferguson, North Carolina
As another year comes to a close I would like to take this opportunity to wish each and all a safe, happy, loving and symptom-free holiday season. I know sometimes it is hard to count your blessings, but know that each one of you reading these words is part of a community that offers you comfort and support. It has been our goal to provide everyone the love and support that we all need when times get tough.
It has been a busy and exciting year for ASAP. We have continued our social media support outlets, maintaining our level of support through various Facebook pages and our bulletin board. We have continued our legacy of providing telephone support and expanded our base of support groups. Our website has been completely revamped, providing a place where people can feel comforted while investigating information relevant to their disorders in a logical, organized and factual manner. Four new research grants totaling over $100,000 were awarded. We recently held our annual conference which commemorated 25 years of service to our community including 25 annual conferences, 25 years of research, 25 years of raising awareness, 25 years of support, 25 years of new friends, and 25 years of fundraising to achieve our goals. We are honored to have served you during this time and look forward to many more years of service.
All of which leads me to what we are doing to continue our mission. Recently we increased our social media presence with a group page dedicated solely to persons affected by syringomyelia without Chiari. This page allows people to interact with others who share their experiences. Often times, symptoms of both syringomyelia and Chiari are lumped together causing confusion about the singular effects of syringomyelia. This page will provide a site to share stories, compare experiences, and offer a forum for support and encouragement.
We are pleased to announce the Sy-ringo-my-What?? Steps Across the States walk-a-thon. It is our hope that each state will be represented in this national event. This walk will be held April 26, 2014. We are currently in the planning stages and look forward to it being a success. This is an opportunity for all those affected by syringomyelia to raise funding, awareness, and education about the devastating effects of this disorder. If you are interested in hosting a Sy-ringo-my-What?? Steps Across the States event in your area please contact me. In order to allow adequate preparation, please contact me prior to December 31, 2013. As our way of thanking you for continuing our mission, monies raised through this walk will qualify for the L.E.A.R.N. Points Program thereby giving you the opportunity to attend our next annual conference.
Before I close, I would like to take this opportunity to ask each of you to consider a year- end show of support with a donation to ASAP. There is no amount that is too large or too small and I am pleased to say that 87% of any donation goes directly to our programs, including but not limited to research, support, conference, etc. It is through your generosity that we have come this far. Twenty five years ago, when this organization was founded by Barbara and Don White, very few people had ever heard of these disorders. Never have we or the medical community had the understanding of these disorders that we have today. Thank yourselves and your generosity for bringing us to the level of awareness and research that we currently enjoy. Unfortunately, even with everything that has been accomplished, our mission is ongoing. So please take a moment, go to the website, make a donation, and show your support.
Lastly, I wanted to take this moment and offer thanks to our community, their caretakers and loved ones, our staff, boards and doctors for seeing us through yet another year. I think of you all with thoughts of deep gratitude and fond appreciation for all you have done, still do, and will do in the future for all of those persons, who we are related to through this common bond.
Gentle Hugs always,
I was reading an article from the NIH about how the arts affect your health. It says studies have found evidence that singing releases substances that serve as the brain’s own natural pain-killers and when we listen to music, levels of molecules important for fighting infection can rise. Scientists are also studying how art therapy can help to ease pain and stress and improve quality of life. and then there’s writing. Expressive writing – writing about traumatic, stressful or emotional events – has been shown to have a number of health benefits, from improving symptoms of depression to helping fight infection. Remember that the arts are no substitute for medical help but they can still bring health benefits. You don’t have to be good at them for them to be good for you.
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.
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.
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.