Chiari research could do with some celebrity push

25 Sep

A group of about 300 persons on Saturday, September 23, held a walk in Morgantown, WV, to create awareness about Chiari, an acute neurological condition, and to also raise funds for research.


Dubbed “Conquer Chiari Walk Across America”, the event was attended by persons living with the disorder – believed to affect 1 in 1000 of the world’s population – as well as by parents of children diagnosed with Chiari and volunteers.


Participants later converged at the WVU Erickson Alumni Center for refreshments during which they were addressed by a number of dignitaries, not least former West Virginia University football coach Don Nehlen, who offered words of support for all affected  by Chiari and promised to do his part to spread the word about Chiari. There was also an interactive session with some players of the WVU men’s basketball team.


A fundraiser, via raffle, was also held during the event, with some participants winning such prizes as a trip to the famed Niagara Falls, gift hampers, T-shirts, among others.


In an interview during the event, John Williams, a parent whose daughter suffers from Chiari, said Saturday’s event in Morgantown was the fifth time since the annual drive to promote public awareness about and raise funds for the disorder was launched.


“We have so far raised $12000 through donations and some fundraising throughout the year,” Mr Williams said, noting that such funds have largely come from contributions from parents, kids, and friends. “All the money raised goes to research.”


He added that medical doctors at the Chiari Patient Education Foundation and other health and research institutes across the United States such as mechanical and biochemical engineers form part of the Chiari support network, and “all participate in research trying to find a cure for it.”


This year’s “Conquer Chiari Walk Across America” in Morgantown, held on the third or fourth Saturday of September every year, drew participants from Morgantown, Martinsburg, Wheeling, all in West Virginia, and from other states like Pennsylvania, North Carolina, and Maryland.


An estimated 300,000 Americans are known to suffer from Chiari malformation, also known as Arnold-Chiari, ACM, tonsillar ectopia, and hindbrain herniation.


Patients are usually born with the condition and though symptoms can emerge at any age, they are mostly noticeable in infancy or later in one’s 30s. Unfortunately, a lack of familiarity with the condition leaves doctors unable to diagnose ACM in sufferers early.


Persons suffering from Chiari are generally unable to undertake strenuous activities or bend. Depending on the severity of symptoms, walking or driving long distances may not be possible for others due to difficulty in prolonged sitting and standing, while others are unable to withstand noisy environments or even perform domestic chores.


The annual event to raise awareness about ACM is a good one, but more could be done. Given that more than 300,000 Americans – roughly a thousandth of the total population – suffer from the disease, and with improved methods of diagnosis the numbers could swell, the campaign to bring attention to the disease would need to be stepped up. Making such meetings quarterly could help raise more contributions for Chiari research, while the educational drive could be taken to schools, churches, societies, and organisations. In addition to making more people aware of the prevalence of the condition, even more money could be realised.


The need for the inclusion of celebrities to raise awareness about ACM and for funds for research should be explored, too.  A fundraising internet campaign in 2015 for Amyotrophic Lateral Sclerosis (ALS), a degenerative muscle disease, featured such A-list persons as Microsoft’s Bill Gates, Facebook founder Mark Zuckerberg, Oprah Winfrey, Tyler Perry, and Jeff Bezos, founder of Amazon, among others, in an Ice Bucket Challenge. 2.5 million people across the US  caught the bug and in the end $115million was raised, according to CNN. A year prior, support for ALS had brought in a modest $32000.  And yet ALS affects only 20,000 Americans! Chiari has 15 times more sufferers.


In addition to research, money is also needed for surgery, the main form of treatment for Chiari patients. And the $12000 raised so far is insignificant considering the cost of surgery and the number of patients needing it.


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