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 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

THE ST. LOUIS 2020 WALK TO DEFEAT ALS® BRINGS THE WALK TO YOU: #ALSWalkYourWay

ST. LOUIS, MO

Saturday, June 27, 2020

For the safety of the people with ALS we serve, their families, our staff, and supporters, our 2020 St. Louis Walk to Defeat ALS will not occur in Forest Park this year. Instead, we’re bringing the Walk to you. We still want you all to walk this June 27 at 10 a.m., but we want you to walk where it makes sense for you: down your street, in your neighborhood park, around your coffee table … anywhere you want! Just be sure to observe social distancing measures and be safe! Our Chapter is providing Walk team captains with a step-by-step guide on how to create your own Walk. And we don’t want anyone to miss out on the community spirit we all enjoy on Walk day, so we’ll be providing opportunities to watch some of the features from Walk day on our Facebook page, and ask you to join in by using the #ALSWalkYourWay hashtag when you post about your Walk on social media.

We still need YOU to make this 2020 Walk a success, so 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. and Raymond James.

ALS ADVOCACY CONFERENCE STILL HELPS CONNECT PEOPLE REMOTELY

Even though we could not travel to Washington D.C. for the annual ALS Advocacy Conference this year, Chapter staff and ALS advocates from our region still participated in virtual sessions, hearing from National ALS staff as well as congressmen, neuroscientists, and researchers. The conference sessions included: Capitol Hill Update: ALS Advocates Make the Difference; ALS Research: Update on Clinical Trials, Biomarkers and Patient Perspective Surveys; and Care Services: Adapting to a Changing Environment.

Another important part of the ALS Advocacy Conference is Capitol Hill Day, where advocates and staff blanket Capitol Hill for meetings with senators, representatives, and staff. These meetings still happened this year, but they were held remotely. You can read more about the day on our blog.

VIRTUAL SUPPORT GROUP PROGRAM PILOTED

In an effort to extend the reach of our services during the current situation and beyond, our Chapter held its first virtual support group meeting last month. The pilot meeting allowed us to work through the system and learn some lessons for the future. We will have more information on upcoming virtual support group meetings soon.

CHAPTER EVENTS

10th ANNIVERSARY KIMMSWICK VIRTUAL 5K & 1 MILE FUN RUN/WALK

Saturday, August 8, 2020

Out of an abundance of caution and with the safety of all people with ALS, our participants, volunteers, and staff as our primary concern, we have determined that the 10th Anniversary Kimmswick 5K & 1 Mile Fun Run/Walk presented by The Blue Owl Restaurant and Bakery will be held in an entirely virtual format.

We will miss seeing everyone in front of The Blue Owl in Kimmswick, but even though we won’t gather in person to walk and run in support of ALS, please know that our ALS community needs your support now more than ever. The ALS Association St. Louis Regional Chapter is working day-in, day-out to be sure those needs can be met and to allow all people with ALS to continue to live their lives to the fullest.

Registration is still required to participate in the virtual event. You can find out more about the virtual event format and register on the Kimmswick website.

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

SWING FOR A CURE GOLF TOURNAMENT

Virtual Auction—Thursday, August 20
Golf—Friday, August 21


The ALS Association Swing For a Cure Golf Tournament is celebrating its 25th Anniversary. For the first time in the tournament’s history golfers will be able to enjoy a virtual auction on Thursday, August 20. The auction is a vital part of the Swing For a Cure Golf Tournament and while due to the impact of COVID-19 and out of an abundance of caution we will not be able to all dine together, we will be able to join together virtually to support our mission. The virtual dinner event will be followed by a round of golf at Glen Echo Country Club on Friday, August 21. This time-honored annual event features 18 holes of golf, a mouth-watering brunch, plus exciting games and vendors on the course. The safety of our golfers, staff and event volunteers is a top priority, and we will stay closely tuned to how the COVID-19 situation is evolving to ensure the well-being of everyone throughout the our event. To purchase foursomes, sponsorships and to read more about our event visit the Swing for a Cure website.

For more information on how you can get involved, contact Natalie Pottebaum at npottebaum@alsastl.org or 314-432-7257 ext 230.

MARK YOUR CALENDAR FOR THE SPRINGFIELD 2020 WALK TO DEFEAT ALS®

SPRINGFIELD, IL

Saturday, September 26, 2020

In an abundance of caution to those living with ALS, their families, staff, volunteers and everyone involved with the Springfield Walk to Defeat ALS, we have decided that instead of having the Walk this year in Southwind Park, we are bringing the Walk to your neighborhoods! We still want you all to Walk on September 26 at 10 a.m., but we want you Walk where it makes the most sense for you, whether that's down your neighborhood street, rallying people in your subdivision, in your local park, or through video/Zoom chat. Get your family, friends and neighbors involved in any way that you feel comfortable and still keeping social distancing guidelines in mind.

Even though we won’t be able to be all together in Southwind Park on Saturday, we will all be walking together on same date and same time, honoring those impacted by ALS. Please feel free be share photos, videos through social media—use the hastag #ALSWalkYourWay—to truly show the impact of the day across the Springfield area and central Illinois.

Please be sure to include those living with ALS in your Walk day plans whether they are able to be a part of your neighborhood Walk or organize a caravan parade by their house to show your support! Any way to include and make everyone feel comfort.

We still need YOU to make this 2020 Walk a success, so register today at WalkToDefeatALS.org. Questions or need help? Please contact Andrea Flanigan at aflanigan@alsastl.org or 314-432-7257 ext 231.

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:

GOLF TOURNEY FOR ALS
Saturday, August 8, 2020

Save the Date for Golf Tourney for ALS on Saturday, August 8, at Egyptian Country Club in Mounds, IL. Create a team for a 4 person scramble for a morning session with an 8 a.m. tee off or an afternoon session with a 1 p.m. tee off. There will be silent auctions, door prizes and a day full of fun! Contact the country club at (618) 645-6412 for more information.

LADIES SWINGING FORE HOPE
Saturday, September 12, 2020

Join the Ladies Swinging Fore Hope 2020 Gold Tournament on September 12 at Incline Village Golf Course in Foristell, MO. This golf tournament includes a 4 Lady Scramble, lunch, auction, contests, and more! For more information, contact Maureen Schott at ladiesswinging4hope@gmail.com.

LET'S OUTSMART ALS TRIVIA NIGHT
POSTPONED

Team Walk for Mark is hosting a Trivia Night in memory of Mark Donovan and Sean Murry and all proceeds will benefit the Walk to Defeat ALS. The trivia night is postponed from its original date. Check back for a new date. For more information or to set up a table, contact Maura Carter at: walk4mark@gmail.com.

TRIVIA NIGHT AT VFW POST 3838
POSTPONED

The trivia night at VFW Post 3838 in Cape Girardeau is being rescheduled for summer 2020. All proceeds 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
TBD

Look forward to another night out at the Rent One Ballpark for ALS Awareness Night. 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.