Known for his colorful fashion sense and his work fighting amyotrophic lateral sclerosis, Dr. Bedlack is an award winning practitioner in his field and has extensive experience with ALS clinical trials as well as leading ALSUntangled, which utilizes social networking to investigate alternative and off-label treatments.
Dr. Bedlack’s trademark colorful fashions, whether it’s neon blazers or wildly-patterned pants, represent a personal love of clothes as well as a practical professional choice. Patients and families love them and the clothes help him “Create as bright an atmosphere as I can, because the disease is really dark.”
One of Dr. Bedlack’s biggest medical inspirations is Fox Mulder, a detective from “The X-Files,” a 1990s television show that often explored paranormal and alternative explanations for crimes. Dr. Bedlack is not looking for ghosts or aliens, but he’s willing to “think outside the box” and explore alternative ALS therapies—seen on his website ALSUntangled.com—whether its energy work or fecal transplants. “When we’ve got something this bad that we can’t fix yet, we’ve got to be open to all possibilities.” ALSUntangled engages patients in a shared decision-making process about whether specific alternative treatments are worth trying. The program has grown by leaps and bounds since it was launched in 2009. Through ALSUntangled’s website, people submit requests for a review of alternative or off-label treatments, adding a new item to the list or voting on items suggested by others. The ALSUntangled team conducts comprehensive reviews of the most-requested therapies using a scientific approach of gathering evidence and reporting results. They start by searching the scientific literature and news articles, then attempt to contact the source of the claims and see if they can perform a site visit to investigate. Finally, they poll the team of almost 100 clinicians volunteering with ALSUntangled to see if any of their patients have experience with the therapy. Final reports are published in the journal Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration. To date, ALSUntangled has completed over 40 reviews that are posted free online.
The ALS Association Central & Southern Ohio Chapter is thrilled to host such a knowledgeable and dynamic speaker at our December 13, 2021 virtual Chapter-Wide Education & Exchange Group. Please save the date and plan to join us for what will be a very informative and exciting group.
Please join on December 13 from 6 to 8 p.m. using this link:
Meeting ID: 575440587
Or dial: +1 (650) 4191505 United States (San Mateo, CA)
Access Code / Meeting ID: 575440587
Losing someone to ALS is something that no one wants to experience. But many, through the frustration and pain, find a way to give back and honor their loved one. Your friends and family can help continue providing services for those still living with ALS by making a donation to the Chapter in memory of their loved one. This can be done by naming the Chapter in your loved one's obituary: Memorial donations may be made to The ALS Association Central & Southern Ohio Chapter, 1170 Old Henderson Rd., Ste. 221, Columbus OH 43220. The Chapter sends thank you letters to all donors and acknowledgment to the family listing the names only (amount is not listed) of those who have made donations.
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