ALS Ice Bucket Challenge Progress

 

IMPORTANT INFORMATION ABOUT OUR CHAPTER AND THE CORONAVIRUS

The ALS Association St. Louis Regional Chapter understands that many of those we serve—people with ALS, their families and supporters—may have questions and concerns related to the spread of the Coronavirus, known as COVID-19. We are closely monitoring national government health agency guidance on taking measures to protect our staff and you. Our highest priority is the safety and well-being of people with ALS, their families and caregivers, and our staff. We are currently evaluating the scheduling of upcoming St. Louis Regional Chapter events. We will provide updates on any event changes as soon as we are able. We have also made minor temporary changes to programs and services until further notice. You can learn more about how we will continue meeting the needs of those we serve in our community here.

Thank you for your patience as we manage this quickly evolving situation.

For the most recent information about the Coronavirus (COVID-19), we recommend that you reference the websites for the CDC, World Health Organization (WHO), and the Missouri and Illinois Departments of Health

For specific information about symptoms you may be experiencing or questions about personal exposure as someone living with ALS or as a caregiver, please contact your physician directly.

For questions about how COVID-19 will impact the support you receive from our organization, contact Maureen Barber Hill, President and CEO at mhill@alsastl.org or Anna Zelinske, Director of Programs and Services for Patient Care at azelinske@alsastl.org, 314-432-7257.

CHAPTER NEWS

VA ST. LOUIS HEALTH CARE SYSTEM ALS CLINIC RECEIVES RECOGNIZED TREATMENT CENTER DESIGNATION

The VA St. Louis ALS Clinic at the John Cochran Hospital has been acknowledged for their exceptional level of care with a national designation as an ALS Recognized Treatment Center.

“Veterans are twice as likely to receive an ALS diagnosis” said Maureen Barber Hill, president and CEO of the ALS Association St. Louis Regional Chapter. “Dr. Sommerville and his team are there for those who have served our country when they need help battling this disease. They’ve reached one of the highest levels of care in the nation. Our team is thankful to have them here in St. Louis.”

ALS Association Recognized Treatment Centers provide compassionate care in a supportive, family-oriented atmosphere. These centers must meet program eligibility criteria and recognition is based on established program requirements, professional’s skill sets, collaborative relationships with their local ALS Association Chapter and access to care. This designation assures people living with ALS and families that these centers offer evidence-based care and services.

DR. TIMOTHY MILLER FROM WASHINGTON UNIVERSITY IN ST. LOUIS HOSTS WEBINAR ON CLINICAL TRAILS

Dr. Timothy Miller from Washington University is hosting a webinar on Tuesday, March 10, at 12 p.m. CDT titled "Simplifying the Search: How to Find the Right ALS Clinical Trial for You." The presentation will provide introductory-level instruction on how to search for ALS clinical trials, what resources to use to find open ALS clinical trials, and where to look for specific information such as eligibility criteria, trial site locations, and if traveling is required. More details and registration information can be found here.

OT STUDENTS FROM SLU JOINING US THIS SEMESTER

Occupational Therapy students Monica Buoni and Olivia McQuilkin from Saint Louis University are joining us this semester to shadow on home visits and at the SLU and VA ALS Clinics. The students will assist with research on quality of life measures for people with ALS while gaining understanding into the needs of people with ALS.

PEOPLE WITH ALS NEEDED TO PROVIDE INSIGHTS ON DAILY EXPERIENCES

Amylyx Pharmaceuticals is looking to recruit individuals living with ALS to participate in an upcoming advisory board meeting in Chicago, Illinois, on April 4, 2020, from 9:30 a.m. – 2 p.m. Amylyx is convening the meeting to gain insights from people with ALS on their daily experience in navigating access to care, monitoring treatment, and obtaining appropriate support resources. The information gathered will inform product development and assist the company in identifying educational needs and gaps in available resources.
 
Amylyx is looking for participants who meet the following criteria:

  • Diagnosed with ALS
  • Not a current (or past) participant in any Amylyx clinical trial
  • Willing and able to travel to Chicago and share their experience

If you are interested in learning more about participation in this advisory board, please contact Amylyx’s agency partner, The Px Group, at: SSolomon@thepxgroup.com. The Px Group will reach out to determine your eligibility and discuss next steps. 
 
Amylyx will pay for travel expenses for you and a caregiver and provide compensation in recognition of the value of your time and input. Providing feedback through this project will not impact your ability to participate in future Amylyx studies. 
 
All discussions, including the follow-up conversations, screening process and the advisory board itself, will be kept confidential.  All personal and/or identifiable information will be maintained in confidence and will not be disclosed outside of Amylyx or its partners or used in any external presentations or communications.

CHAPTER EVENTS

MARK YOUR CALENDAR FOR THE 2020 WALK TO DEFEAT ALS®

ST. LOUIS

Saturday, June 27, 2020 | Forest Park

Join us on June 27, 2020 for the St. Louis Walk to Defeat ALS presented by Dowd Bennett. This year we have a goal of raising more than $450,000 and we know it is a goal we can accomplish together. Our current totals stand at over $60,000 and we are excited for fundraising to ramp up! Register today at WalkToDefeatALS.org. Contact Elizabeth Roe at eroe@alsastl.org or 314-432-7257 ext 226 with any questions.

Thank you to our presenting sponsor Dowd Bennett and additional sponsor the Family of Ray Van De Riet Sr.

SPRINGFIELD, IL

Saturday, September 26, 2020 | Southwind Park

Please join us for the 2020 Springfield Walk to Defeat ALS on Saturday, September 26, at Southwind Park in Springfield, Illinois. There will be a 1-mile walk along with food, music, entertainment and silent auction. Thank you to our presenting sponsor the Family of Jane Calmes and to Memorial Health Systems and Warren-Boynton State Bank. The Walk website is open, so please sign up your team! To register and for additional information, please go to http://web.alsa.org/springfieldilwalk.

Questions or need help? Please contact Andrea Flanigan at aflanigan@alsastl.org or 314-432-7257 ext 231.

SWING FOR A CURE GOLF TOURNAMENT

The ALS Association Swing For a Cure Golf Tournament is celebrating its 25th Anniversary. Save the date for this time-honored annual event that will be held on Friday, August 21, 2020, at the historic Glen Echo Country Club. Glen Echo Country Club combines a great golf experience with the unmatched beauty of the landscape with a legacy spanning over 100 years. For more information on how you can get involved or to learn more about joining our golf planning committee, contact Natalie Pottebaum at npottebaum@alsastl.org or 314-432-7257 ext 230.

COMMUNITY PARTNER EVENTS

Every year, more than 30 community partner events are hosted in support of The ALS Association St. Louis Regional Chapter by families, groups and individuals. Join us for the following events:

CREVE COEUR ST. PADDY'S HALF MARATHON & 7K
Join us on March 7, for the annual St. Paddy’s Half Marathon & 7k. The race begins at 8:30 a.m. on Saturday morning and proceeds go to the ALS Association St. Louis Regional Chapter. For more information or to register please visit missouriruns.com.

The ALS Association St. Louis Regional Chapter is also in need of volunteers for this event. The chapter is the charity beneficiary of this event, and the more volunteers we have means a larger donation to the chapter. Please email Michelle Reynolds Gray at mgray@alsastl.org for more information or to sign up!

LET'S OUTSMART ALS TRIVIA NIGHT
Team Walk for Mark is hosting a Trivia Night Saturday, March 28, in memory of Mark Donovan and Sean Murry and all proceeds will benefit the Walk to Defeat ALS. The trivia night will be hosted at St. Joan of Arc Gym at 5800 Oleatha Ave, St. Louis, MO 63139. Doors open at 6 p.m. and trivia starts at 7 p.m. Enjoy trivia, a 50/50 raffle, drinks, baskets, and more. For more information or to set up a table, contact Maura Carter at walk4mark@gmail.com.

19TH ANNUAL JIM SCHOEMEHL RUN
Save the Date for the 19th Annual Jim Schoemehl Run on Saturday, April 25. In 2001, the Jim Schoemehl Run was created by a Webster Groves student when their marketing teacher's husband, Jim Schoemehl, was diagnosed with ALS. Over the last 18 years this event keeps getting bigger and better each time! More information to come!

TRIVIA NIGHT AT VFW POST 3838
Join us for another year of trivia on Tuesday, April 28, at VFW Post 3838 in Cape Girardeau. Each person that attends will be entered into a drawing for two St. Louis Cardinals tickets and overnight hotel stay at any Drury Hotel location! Registration begins at 5:30 p.m. with trivia starting at 6 p.m. All proceed benefit the ALS Association St. Louis Regional Chapter. For more information or to form a team contact Lori Dobbs at ldobbs@alsastl.org.

ALS AWARENESS NIGHT AT RENT ONE BALLPARK - SOUTHERN ILLINOIS MINERS
Save the Date for ALS Awareness Night on Sunday, July 26, at Rent One Ballpark. Join us for a pre-game Walk around the field and other exciting elements for a night of ALS Awareness. Contact Lori Dobbs at ldobbs@alsastl.org to purchase tickets or for more information.

Are you interested in a new way to support the Association this year? Consider hosting your own Community Partner event. Community Partner fundraising events are organized and managed by a family, group, or individual that would like to raise money to support the ALS Association St. Louis Regional Chapter. Examples of these events include golf outings, bike rides, auctions, raffles, walks, or runs. Be creative and come up with an event we’ve never heard of before! Have fun and support the Association at the same time. Contact Elizabeth Roe at 314-432-7257 ext 226 or eroe@alsastl.org to get started.

Each month, we bring you the latest news from our Chapter here in eNews, but if you are curious to know more about what is happening day-in, day-out, follow us on social media. We are active on Facebook, Twitter and LinkedIn, so if you aren’t already, follow us for more updates on events, advocacy, research, and the latest from our blog ALS Connect. And if you are already a follower, let your friends and family know where they can find us.