President’s Letter December 2013

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,