The 2016 annual conference dates are fast approaching. This will be our first meeting in the San Francisco area since 1991. Hope to see you there!
Support groups play a vital role in fulfilling the needs for those diagnosed with these disorders. Special thanks to the founding support group leader, Amber Barnes for all she does for ASAP, the OKC group and the CM/SM community. Ann Humphries has agreed to take over the role of support group leader and has a meeting planned for next month. She is also looking at possibly having one toward the end of March if things work out. We will keep everyone posted. Be sure to check Upcoming Events for all support group meeting dates.
With more adaptive technologies and progressive legislature, prospective college students with disabilities have countless resources available to make the transition to higher education less stressful. Affordable Colleges Online just updated their College Resources for Students with Disabilities guidebook. You can see the guide here: http://www.affordablecollegesonline.org/college-resource-center/resources-for-students-with-disabilities/
They’ve also created a complementary guide to scholarships and financial aid for students with disabilities to help students and their families better understand the vast number of financial aid options available to them. Key elements of the guide include:
– A comprehensive review of all of the scholarships available, listed by disability
– Amounts awarded and deadlines for each scholarship
– Debt-forgiveness options for those who acquired a disability post-graduation
You can find this guidebook here: http://www.affordablecollegesonline.org/college-resource-center/affordable-colleges-for-students-with-disabilities/
The 2015 ASAP Walk and Roll for a Cure was held on Saturday, September 19th at the Bretton Woods Recreation Center in Germantown, Maryland. By all accounts, the event was a tremendous success. Molly Lichtenstein, who organized and coordinated the event, with support from ASAP President Patrice Schaublin and former board member John Caemmerer , could not have been happier with the results.
“We had perfect weather, a beautiful venue, and a great turnout”, she said. “I could not have been happier with the way things turned out.” Patrice started things off with some brief introductory comments to explain the history of the ASAP organization, as well as providing the audience with some facts about Chiari Malformation and Syringomyelia, followed by some thoughts from John as to why this cause is so important to him. Molly added a few of her own thoughts on what it is like to live with these conditions, and then it was time to walk. Once everyone had completed the walk, a raffle and a silent auction were held, in order to raise more money for research and awareness.
Between donations, walk registration, corporate sponsorships, and proceeds from the raffle and silent auction, we were able to raise more than $20,000, as well as increase awareness of these rare conditions. “As anyone who suffers from a rare disease knows all too well, one of the biggest challenges in getting treatment and improving the way you feel is finding doctors who know anything about the condition”, Molly said. “I am very proud and excited to be able to contribute to the research efforts by raising money and organizing events like this one to increase awareness. “I am also extremely grateful to all the people who have been so generous, compassionate, and supportive by donating money and volunteering their time to help with the walk.” “Now, it’s time for a much-needed rest, and then, in early 2016, it will be time to start planning for next year’s walk!”
ASAP 2015 Awards
Helping Hand Volunteers
Shining Star Volunteers
Michael “Yogi” Borys
Key Volunteer Awards
Barbara White Award
Mary & Fred Parker
Outgoing Board Members
We are grateful to these generous volunteers who take part in the growth of ASAP, giving of their knowledge, their skills and their time.
Click on title above to view or here to download a copy.
New video promotes awareness of Chiari and syringomyelia. Chiari Who? Syringo What?
Miracle Flights is in the process of expanding our services to include flights to camps and conferences such as the upcoming ASAP’s Chiari & Syringomyelia Conference in Ann Arbor, MI. The following paragraphs explain in more detail the free travel service that we provide to families in need who cannot afford the cost of travel to life-saving medical treatment. Contact information is at end of email and attached is our latest annual community report.
In the case of a camp or a conference, the patient flown will need to have a consultation with a doctor during the camp / conference – in other words some kind of interaction would be part of the conference or camp cl inic. The consultation would not have to be as in a normal doctor visit, but some kind of face to face interaction. We will need the name of this medical professional on our flight form in order to provide the free travel in order to fulfill our IRS requirements as a 501c3 charitable organization. We can fly for free in the case of a child, two additional adult caregivers / parents and in the case of an adult one additional caregiver.
Miracle Flights for Kids flies both children and adults in need to wherever they need to go for medical treatment, and we are providing flights for International patients, so anyone from Mexico, Canada or elsewhere is able to apply. They will need additional documentation – Visa, passports of course and a minimum lead time of 21 business days is required for us to organize but 60 days if possible.
We coordinate travel on commercial airlines for a patient, child or adult, who must travel out-of-state to receive specialized medical care that is not available to them in the community in which they live. We provide travel as many times as needed. The patient must be physically stable to fly on a commercial airline and be able to sit upright in a commercial airline seat. We provide travel for one, or both, parents to fly with a child patient or caregivers for an adult. As long as the child is able to sit upright in an airplane seat (over age 2) or on the lap of his/her parent (under age 2), then we can provide assistance. An adult patient’s caregiver ticket may also be provided as long as one, or both, physicians also document in the body of their required letter why it is medically necessary for the patient to travel with a caregiver. The caregiver must accompany the patient on both the departure and return dates.
If you know of a family or adult who would like to apply for flight assistance for established medical appointments, please have them go to our website and click the link on the Home Page that says “Request a Flight”. They will be directed to the page where there are links to documents that must be downloaded, completed, and faxed or emailed to us. We ask that all documents from the applicant, as well as the required documents from both physicians, be submitted at least 10 business days prior to the departure date. However, we may still be able to provide assistance on shorter notice, if necessary, but we ask that applicants provide as much lead time as possible. Please note that no documents may be signed or dated older than 60 days prior to the first scheduled appointment. This provides us with the most lead time possible. We cannot coordinate flights until all required documents are received. We assist economically disadvantaged families so, if they are uncertain whether or not they qualify financially, please have them call our office before completing the documents to ensure eligibility.
Please feel free to contact us if you have any questions. Simply call our office and ask to speak to a representative in the Flight Department.
Resource Development Officer
Miracle Flights for Kids
Director of Flight Operations
Miracle Flights for Kids
2764 N. Green Valley Pkwy, #115
Green Valley, NV 89014-2120
July 22-25, 2015
Marriott at Eagle Crest
Cormac Mayer, MD
University of Michigan Health System
Speakers: Allison Ashley-Koch, PhD, Duke University; Rajiv Bapuraj, MD, University of Michigan; Ulrich Batzdorf, MD, UCLA; Paolo Bolognese, MD, NSPC; Wade Cooper, MD, University of Michigan; Leon Dure, MD, University of Alabama; David Frim, MD, University of Chicago; John Heiss, MD, National Institutes of Health; Tim George, Dell Children’s Hospital: Bermans Iskandar, MD, University of Wisconsin,/Madison; Robert Keating, MD, Children’s National Medical Center; Roger Kula, TCI; Lance LaCerte, PsyD; Steve Leber, MD, University of Michigan; Dave Limbrick, MD, Washington University; Cormac Maher, MD, University of Michigan health System; Bryn Martin, PhD, University of Akron; Karin Muraszko, MD University of Michigan; Julie Piazza, University of Michigan; Andrew Ringer, University of Cincinnati; Brandon Rocque, MD, University of Alabama; Vikram Shakkotai, MD, University of Michigan; Nate Stetson, MS DO, Neuroscience Specialist, PC; Aintzane Urbizu, PhD, University of Akron; Nick Wetjen, MD, Mayo Clinic
During the ASAP Chiari & Syringomyelia Conference in Princeton, New Jersey, Erol Veznedaroglu, MD, FACS, FAANS, FAHA, talked about Defining and Recognizing Symptoms of Chiari and Syringomyelia. Watch video now. Make plans now to attend our next meeting July 22-25, 2015 in Ann Arbor, Michigan.