Chiari and syringomyelia are complicated diseases, which require complex solutions.For far too long these diseases have destroyed people's lives, its time to fight back. Education, awareness, and research are our weapons. - ConquerChiari.org
Irvine, CA (PRWEB) September 24, 2013
The Conquer Chiari Walk Across America (CCWAA) is an annual fundraising and awareness event for Chiari Malformation and is comprised of a series of local walks held on the same day. The CCWAA National event included 61 Walk Sites in 39 States and took place on September 21, 2013. As of the night before the walk, across the Nation, Conquer Chiari already had 8,443 registrations, 479 corporate sponsors, and over $357,000 raised and in the bank. “At our walk in Irvine, CA we had 244 pre-registered, and had already earned over $12,000, as of the night before,” said Jennifer Dorkin, Organizer/Volunteer of the Irvine, California CCWAA.
Chiari Malformation (Arnold-Chiari) is a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine and causing many symptoms. A 2004 study of 265 adult patients (Mueller, Oro) documented the wide range of symptoms that can accompany Chiari. 13 symptoms were reported by more than half of the patients. Headache was the most commonly reported symptom with 98% of the group claiming they suffered from them. 20%-50% reported depression, body weakness, balance problems, memory problems, leg/foot numbness, hoarse voice, chest pain, facial numbness, anxiety, slurred speech, arm pain, abdominal pain, and photophobia. Less than 20% reported tachycardia, trouble hearing, vomiting, double vision, vision loss, blackouts, apnea, vertigo, loss of peripheral vision, nystagmus, earache, snoring, thoracic pain, hypotension, wake up choking, leg pain, palpitations, hypertension, gag reflex, and face pain/tingling. 95% of patients experienced at least 5 symptoms.
“I was diagnosed with Chiari Malformation last year. It has been 5 months since my surgery and I am still fighting this painful disorder. My hope is that we can raise awareness on Chiari which will help me and others like me,” said Alicia Quinonez, CCWAA participant.
“We've grown each year in the number of walkers, and the amount raised. Most importantly, we have made people more aware that Chiari exists, and have connected people who have Chiari with others who are in the same boat,” says Jennifer, “We had a fantastic day, in spite of having a difficult year, which limited my time and availability to organize it. Having two awesome co-organizers, Amy Alvarez and my husband, Rich Dorkin, and an amazing planning team, made it all possible. Also, the volunteers who helped that day, and the many walkers who worked so hard raising money before-hand, helped to make it all possible.”
Monies raised will help Conquer Chiari to promote awareness of Chiari Malformation, as well as funding research into conquering it. For more information about Conquer Chiari, please visit http://www.ConquerChiari.org, or contact Rick Labuda, Director at 724-940-0116.
There will be an upcoming fundraiser on November 9, 2013 in Santa Ana, California. The fundraiser will be a concert featuring ‘Visions – A Tribute to Rush”, presented by Faces of Chiari. For more information, please visit http://www.yosttheater.com/calendar/2013/visions-a-tribute-to-rush/
For a positive and encouraging Chiari support group meeting in the Orange County area, or for questions about the Irvine walk, contact Jennifer Dorkin or join Faces of Chiari on Facebook.
Jennifer (at) FacesOfChiari (dot) org
Founder, Faces of Chiari
"The HOME Foundation is Proud to Support Conquer Chiari"
About The HOME Foundation:
The Helping Others Means Everything, or The HOME Foundation, is a not-for-profit organization dedicated to helping our Family of Charities. Frankie Verdugo, President of The HOME Foundation, wants to help as many worthy charities as possible as they struggle during these tough economic times. Frankie Verdugo helps raise funds through luxury dream home raffles, home giveaways, prizes, and high profile celebrity events in Hollywood.
"Our mission is to help charities reach their fundraising goals and to bring awareness to their praiseworthy causes."