These are strange and unsettling times, with the onset of COVID 19. But regardless of these circumstances, we want to let you know that we are here for YOU! We have been working hard to continue to provide crisis support to over 400 vulnerable families facing ALS right now in our 55 county territory in Ohio.
Right now, our ALS community needs social and emotional support more than ever before. We want you to know that we understand that although our day-to-day lives and activities have been impacted by the “Stay At Home” order, our mission has not changed - - We are fully committed to provide you the help and support that you need.
Our staff has been working hard on these things, to redesign the way they provide services:
Even during a pandemic, ALS does not stop. And neither does our work.
Each year, we plan great Community Events – like the Strike Out ALS events and our partnered ALS Symposium with OhioHealth - to provide opportunities for you to come together and experience times of encouragement & comradery, to learn and to increase the level of understanding about ALS within the community. The Walk to Defeat ALS program is part of those events too and they provide the needed funding, in order for us to continue these vital works of support.
In order to keep everyone as safe as possible, we’ve made some changes to those activities, so please go to our website to see the latest schedule of changes. Click HERE and scroll down to “Community Outreach & Fundraising Events”.
If you are looking for a way to occupy your time, the Walk to Defeat ALS Registration is OPEN!! If you’ve had a team before, Click HERE to register your team and get started for 2020! If you have never had a team, register there or call our office at 866-273-2572, Ext. 100 and leave a message, asking for Walk assistance and one of our Development staff will get back to you and work with you, personally.
Stay safe and keep in touch with us – let us know if there is a way we can help and if we can, we will!
Marlin K. Seymour, Executive Director
It can seem that everything has come to a standstill as we all adjust to the new reality of the COVID-19 pandemic. As we all know however, ALS does not stand still. I’d like to share with you what is happening at Ohio State and point out that ALS research and our progress is not standing still either.
The OSUMC ALS/MND Multidisciplinary Clinic and Research Program is committed to providing access to ALS research opportunities for people with ALS and their families. We are an active member of the Northeast ALS (NEALS) Clinical Trial Consortium and collaborate with other academic clinics throughout the world. You will be proud to know that Buckeyes are leaders at NEALS! For example, OSU genetic counselor, Jennifer Roggenbuck, CGC, designed and co-Directs a genetic testing protocol for a national ALS Genetic Access Program. You will hear more about ALS genetic testing and the important work that Ms. Roggenbuck is leading in the near future.
Broadly speaking there are two categories of ALS research. The first are the clinical trials where we test whether a possible therapy is safe or slows the progression of the disease. The second are the clinical studies where we learn important lessons about why ALS happens and develop strategies to stop it.
On the clinical trial front, I’m happy to announce that OSU will be one of the initial sites for the Healey ALS Platform Trial that will begin enrollment later this year. Sarah Heintzman, our nurse practitioner and research manager, and I are proud to serve as co-Chairs of the Platform Trial Recruitment and Retention Committee. We will be sending more information about this important trial soon. In addition, we are prepping for at least two more clinical trials to open in the coming months. Each of these trials will provide the ALS community with engagement opportunities for the treatment of ALS.
On the clinic study front, we are wrapping up the clinical part of the AnswerALS study. AnswerALS is the largest ALS discovery study ever performed and is already yielding new discoveries (see www.answerals.org). We extend our sincere gratitude to all of the participants and their families in the Ohio River Valley Region who volunteered for AnswerALS.
We have additional clinic studies available to research the mechanisms of disease and to develop relevant model systems to study in the laboratory. There is much to be done!
To learn more about ALS research opportunities and to get involved, please contact Sarah Heintzman at Sarah.Heintzman@osumc.edu, or 614.293.4973
Research is still moving forward. On behalf of our entire Team, we wish all of you the very best and hope to help with ALS research opportunities in the very near future.
Stephen J. Kolb, M.D., Ph.D.
Director, OSUMC ALS/MND Multidisciplinary Clinic and Research Program
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.
May is National ALS Awareness Month and we are looking for the creativity and perspective of our young artists to educate, inspire, and spread awareness. Children (10 and under) may submit original artwork to firstname.lastname@example.org by May 10th to be entered into a contest for an ALS prize pack! One winner will be selected from each of our Walk areas – Southeast Ohio, Lima, Dayton, Columbus and Cincinnati. Please use the theme of May is ALS Awareness Month or the Walk to Defeat ALS®. If you would like to see your artist on our social media outlets, please submit the entry with the child holding their artwork, their name, age and the city where they live.
Trimble High School, 1 Tomcat Dr, Glouster, OH 45732
Participate as an individual, family, group or corporate team,virtual walker, or simply make a donation. Take the Ice Bucket Challenge or challenge someone else. Every dollar makes a difference.
Fifth Third Field, 220 N Patterson Blvd, Dayton OH 45402
Huntington Park, 330 Huntington Park Ln, Columbus, OH 43215
Great American Ball Park, 100 Joe Nuxhall Way, Cincinnati OH 45202
As part of these efforts, we are pleased to announce that nation’s largest gathering of ALS advocates is going virtual!Held from May 26 through June 3, the 2020 National ALS Virtual Advocacy Conference will bring together ALS advocates from across the country to learn about the latest in ALS research, care services and advocacy and engage with Congress on policy priorities that will improve the lives of people with ALS.
For a complete overview of the 2020 National ALS Virtual Advocacy Conference, please visit www.alsadvocacyconf.org.
While Congressional offices are currently closed to visitors, legislators are still hard at work. This represents an incredibly valuable opportunity to continue our ongoing virtual advocacy to advance our policy priorities on Capitol Hill.
There is no fee to participate in the 2020 National ALS Virtual Advocacy Conference, but registration is required. To register please visit https://cvent.me/9aXZxG.
PIGGEST RAFFLE EVER
Buy your Pig Now for $5 for a chance to Win Great prizes. The ALS Association Central & Southern Ohio Chapter will receive a $5 donation. It's a WIN/WIN for the you and the ALS community we serve.
1ST PRIZE: $10,000 Cash ($5,000 to the person purchasing the ticket and $5,000 to the charity for which the ticket was purchased).
2ND PRIZE: $5,000 Cash ($2,500 to the person purchasing the ticket and $2,500 to the charity for which the ticket was purchased).
1ST PRIZE: Cincinnati Experience (Getaway weekend valued at $1,500)
Mark your calendars! The American Legion Post #6 in Springfield, Ohio brings you the first ever Ferryman Cruise-In for ALS in honor of beloved past commander, Gary Ferryman. The fun starts at 2pm on Sunday, May 17 with a rain date of May 31. There is a $5 entry per vehicle, food trucks, a beer garden with cash bar and a DJ. Please contact Tony Hillard at 937.631.0376 with any questions. All proceeds will be donated to the ALS Association Central & Southern Ohio.
All Families and friends of The ALS Central & Southern Ohio Chapter are invited to Dinner.
Monday, May 18, 2020 Ι Dewey's Pizza - Austin Landing
4pm - 10pm
Present paper flyer or via mobile device and up to 20% of all food purchases from 4pm - 10pm will be donated to the chapter.
Friday, May 22, 2020 Ι Heatherwood Golf Course
4-Person Select Shot Golf (Scramble)
Entry Fee include: Green Fees, Cart, Range Balls, and Lunch
$260/Team or $65/Player
CLICK HERE TO SHOP FOR ALS MERCHANDISE