Chiari Malformation

Arnold Chiari Malformation

Ohio Awareness Event

To contact Nicole Hutnik please email her at:  Nicole@chiariansunite.org     Nicole is in charge of a support group and starting a Non-Profit here in Ohio.  

 

 

Southern Ohio Conquer Chiari Walk

We had a great turn out for the first year!  We had people all the way from the Ohio-Michigan border down to Florence, Kentucky.  The walk had a wonderful mix of people who suffer from Chiari/Syringomyelia and those who were there to support someone they knew and love that suffers.  I am still waiting to hear our final amount collected.  I have talked to the other organizers and they all had a successful walk day.  Everyone was so excited to be standing up to bring awareness to Chiari and Syringomyelia.  Not to mention we all benefit from research!  Bringing awareness to Chiari and Syringomyelia only betters our chances.  If more people find out about theses conditions the more they understand and want to help.  The more we raise for research, the more answers and better outcomes we get!!  We all want these condtions to be household names.  Next years walk will be taking place on September 19th.  If you see your city listed contact the organizer and see if they need you to do ANYTHING!  If you do not see your city listed, contact the director of Conquer Chiari and see what you can do to get a walk in your city!  United We Stand, Chiari We Conquer!

Ohio Chiarians We need your help!!! This is a repost from Ohio's Chiari non-profit organization Giving a Chance Foundation.                                                                          

In an attempt to keep monies earmarked for medical here in Ohio, we would like to have an Ohio Chiari Medical Conference in September 2009.  Ohio medical personnel on all levels need better understanding of Chiari and related conditions, so our residents will no longer feel the need to seek medical attention outside of Ohio.  
 
To help us show a need for this conference, we need all those with Chiari and related conditions to fill out a very short form which can be found on ChiariPeople of Ohio under the page heading "Calling all OH Chiarians" -  http://www.chiariansunite.org/allchiarians.htm
 
Conditions Include:
Chiari Malformation I, II, III
Syringomyelia
Tethered Spinal Cord
Hereditary Disorder of the Connective Tissue
Ehlers Danlos
Marfans
Basilar Impresson/Invagination
Retroflexed Odontoid
Spina Bifida Occulta
Pseudotumor Cerebri
Pseudotumor-LIKE Cerebri
Functional Cranial Settling
Craniocervical Instability
 
PLEASE, send any Ohio Resident with one or more conditions above to:   http://www.chiariansunite.org/allchiarians.htm
 
If you know of someone who lived in Ohio with this condition/s and is now deceased within the past 20 years, please fill out the form to the best of your knowlege.  Beside their name write deceased.  Under the last question put your contact information -  name, email address, etc.
 
You have my permission to forward this email to those affected by the above conditions.
 
If you have any questions or suggestions, send me an email.
Thank you SO VERY MUCH for your continued support of the Chiarian community!  
 
Nicole G. Hutnik**
To Contact Nicole   Nicole@chiaripeopleofoh.org

www.givingachance.org

www.caringbridge.org/visit/hutnikfamily

www.chiaripeopleofohio.org

**All correspondence should not be considered, or in lieu of, medical advice, diagnosis, or treatment from a qualified physician, surgeon, or health care provider.  Nicole G. Hutnik, Giving a Chance Foundation, ChiariansUnite at YahooGroups, and ChiariPeople of Ohio and their services does not constitute the practice of medical, nursing or other professional health care advice, diagnosis or treatment.

Nicole Hutnik is a patient and mother of three patients with Chiari Malformation, Tethered Cord, Ehlers Danlos, and several other conditions.  She cannot give advice nor suggest where you should go to seek medical attention.  She can only tell you where she and her family seeks assistance.

We advise everyone to always seek the advice of a physician or other qualified health care provider with any questions regarding personal health or medical conditions. Never disregard, avoid or delay in obtaining medical advice from your doctor or other qualified health care provider because of something you have read in an email or on-line. If you have, or suspect that you have, a medical problem or condition, please contact a qualified health care professional immediately. If you are in the United States and are experiencing a medical emergency, please dial 911 or call for emergency medical help on the nearest telephone.

The Ohio Chiari Awareness Event was held on September 29, 2007.

We had people and families from Granite City, IL, Louisville, KY, Eastern PA, all over Ohio and Indiana.  We had a great turn out for our first event.  Our speakers included Dr. James Bryant; Chief of the Bureau for Children with Medical Handicaps at the Ohio Dept. of Health, Dr. Francesco Mangano; Pediatric Neurosurgeon, Assistant Professor at the Cincinnati Children's Hospital (also my NS),  Ray D'Alonzo P.h.D., is an Assoicate Director of Research and Development at Procter & Gamble Pharmaceuticals and author of the book Contents Under Pressure  (about his own experience with Chiari) and Dr. John Tew Jr. whom has over 30 years experience and specializes in neurosurgery for brain tumors, intercranial aneurysms, arteriovenous malformations and facial pain.

    We raised a helpful amount of money for Wishes & Rainbows and Giving A Chance Foundation.  Both nonprofit organizations help people and families with medical expenses,  travel expenses, personal finance assistance.  We really appreciate everyones help, whether it was posting our event, speaking, donation, working the event and we really appreciate everyone who attended our event!! 

My newspaper article link.....Thank you Mr. Wilson and the Pulse Journal

http://www.pulsejournal.com/n/content/oh/story/news/local/2007/09/12/pjm091307chiari.html

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4H Group Washes Cars For Chiari
On July 7th, the Dark County, Ohio 4H Canine Capers joined the battle against Chiari by holding a car wash at the Greenville Kmart. In addition to raising money, each person who got their car washed received a Conquer Chiari brochure.
The event was held in honor of Matthew, a Chiarian who was decompressed in January of this year. Matthew's cousin, Taelor (who is a member of the 4H group, came up with the idea of a organizing a Chiari Car Wash for their community service project.
Congratulations to the Dark County, 4H Canine Capers for a job well done!!

       Thank you to the Canine Capers for honoring Matthew and helping us raise money for Chiari.  WE LOVE YOU TAELOR!!!!

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Chiari Research Walk In Ohio Raises Money And Awareness


On June 24th, Chiari patients, family members and supporters gathered in Ohio for the First Annual Chiari Walk - Ohio. The event was a big success with a strong turn-out and over $2200 was raised for research. Families came from near and far to raise their voices, raise awareness and raise money to Conquer Chiari.
Special thanks to the organizers, Anna Sherwood and Cristy Workman, and of course a big thanks to all those who participated by walking and raising money.
Way to go everyone!! Hopefully this will be the first of many successful events to come.