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 ensure everyone’s protection during this time. Our highest priority is the safety and well-being of people with ALS, their families and caregivers, and our staff. We have made minor temporary changes to programs and services until further notice. You can find out more about our Chapter and COVID-19 here.

Thank you for your patience as we manage this ever 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. The United Way 2-1-1 Helps site also offers good information about local resources.

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 Katie McGovern, President and CEO at kmcgovern@alsastl.org or Anna Zelinske, Director of Programs and Services for Patient Care at azelinske@alsastl.org, 314-432-7257.

CHAPTER NEWS

PARTICIPANTS WITH ALS NEEDED FOR STUDY ON MINDFULNESS AND SELF-COMPASSION

The ALS Center at Washington University School of Medicine is recruiting patients with ALS for a new research study to better understand how mindfulness and self-compassion may help with emotion regulation, well-being, and quality of life. Participants should be 18 or older and diagnosed with ALS with internet access via computer or tablet and can use this device without assistance, with caregiver assistance or with an adaptive device. If you are interested in participation or want to learn more, contact: 1-844-257-2273 or ALS@wustl.edu.

WE WANT YOU FOR 2022 EVENT COMMITTEES

We are looking for dedicated members of our ALS community to join our 2022 event committees. Throughout the year our Chapter hosts five major events—our St. Louis Walk to Defeat ALS, Springfield, IL Walk to Defeat ALS, Swing For a Cure golf tournament, Kimmswick 5K and November Game On! dinner event—that would not be successful without the hard work and enthusiasm of our event committee members. Committee members assist with event experience, logistics, auction items, sponsors and more. If you are interested in learning more about a specific committee or discussing which committee might be the right fit for you contact us at: info@alsastl.org.

FINDING A WAY—A LOOK BACK AT 2021

For a lot of reasons, 2021 was a roller coaster ride. But while COVID continued to dominate the headlines, within the ALS community progress in advocacy and research provide reasons for hope. As head into 2022 in earnest, on our blog ALS Connect we took a look back at 2021 to see where we were and where we are heading.

VIRTUAL CAREGIVER SUPPORT GROUP

Our virtual caregiver support group designed for the unique experiences and needs of ALS caregivers. The group meets the second Monday of each month at 3 p.m. and the next meeting is January 10. To register, visit: https://bit.ly/Caregiver_Group_Registration.

JOIN OUR NEW VOLUNTEER FACEBOOK GROUP

Our Chapter has a Facebook group for volunteers to stay connected and updated on different opportunities in the St. Louis Regional Chapter. Please feel encouraged to participate in discussions or ask questions on any of the posts! Nothing is more unstoppable than when people come together—current volunteers can join the Facebook group here.

VIRTUAL SUPPORT GROUP PROGRAM

In an effort to extend the reach of our services during the ongoing pandemic and beyond, we began a virtual support group program. The current group is a mixture of people with ALS and caregivers of people with ALS. We have gotten great feedback from attendees and are hopeful more people will join us going forward. Our next support group will be held on Tuesday, January 11, at 6:30 p.m. You can find out more and register here.

LIFE AND ESTATE PLANNING FOR EVERYONE IMPACTED BY ALS

The ALS Association St. Louis Regional Chapter is here to help address the unique needs that people with ALS, their families, friends, and caregivers face when planning for their futures. Let’s work together to put a plan in place aligned with your future goals, establish your philanthropic legacy, and give yourself some future peace of mind, click here to learn more. By making a gift in your will, trust or by beneficiary designation those who commit their life and legacy to our life-saving mission are eligible to join our Chapter’s Legacy Society. If you yourself have committed to a gift in your estate plans and/or would like to join the Legacy Society, please let Natalie Pottebaum know by reaching out to npottebaum@alsastl.org

CHAPTER EVENTS

MARK YOUR CALENDAR FOR THE 2022 WALK TO DEFEAT ALS®

ST. LOUIS

Join us on June 25, 2022, for the St. Louis Walk to Defeat ALS. This year we have a goal of raising more than $450,000 and we know it is a goal we can accomplish together. Register today at WalkToDefeatALS.org. Contact Elizabeth Roe at eroe@alsastl.org or 314-432-7257 ext. 226 with any questions.

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 for the Creve Coeur St. Paddy’s Marathon, Half Marathon & 7K will be happening LIVE on Saturday, March 12, 2022. Proceeds go to the ALS Association St. Louis Regional Chapter. For more information or to register please visit missouriruns.com. If you would like to volunteer, please contact Brittany Hafford Smith at bhafford@alsastl.org.

21ST ANNUAL JIM SCHOEMEHL RUN
Save the Date for the 21st Annual Jim Schoemehl Run on Saturday, May 7, 2022. 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 many years this event keeps getting bigger and better each time! More information to come!