ALS Ice Bucket Challenge Progress

 

CHAPTER NEWS

SPRINGFIELD, IL 2019 WALK TO DEFEAT ALS®

The Springfield Walk to Defeat ALS® has been rescheduled to Sunday, September 8. The times have also changed—registration starts at 1 p.m. and the Walk will start at 2 p.m. at Southwind Park. There will be a 1-mile walk along with food, music, entertainment and silent auction. Feel free to bring a pop-up tent and a picnic lunch! To register and for additional information, please visit the Springfield Walk website. If you have already registered for the Springfield Walk you do not need to do so again. Please contact Andrea Flanigan at aflanigan@alsastl.org or 314-432-7257 ext. 231 with any questions.

Thank you to our presenting sponsor The Jane and Mark Calmes Family and additional support from Ameren Illinois, Memorial Health Systems, and Warren-Boynton State Bank.

gALS COMMUNITY GARAGE SALE

Join the gALS group for a Community Garage Sale on Saturday, September 21, 7:30 a.m. (Rainout date: Sunday, September 22) at the ALS Association Office, 2258 Weldon Parkway, St. Louis, MO 63146. You'll find items for decorating your Home (wreaths, candle holders, large and small vases, Christmas decorations and more), items for your kitchen (including small appliances), home electronics, sports memorabilia and other collectibles, and much, much more. Please come out, browse and take home some treasures. All proceeds go to the gALS Mission of providing nutritional supplements for the ALS community we serve.

gALS is a social and philanthropic group comprised of women who are former caregivers, united by a dedication to support people with ALS and their families.

POWER LIFT TOWER AVAILABLE TO LEND

A Bruno Independent Living Aids Power Lift Tower is available to lend to a family living with ALS. The lift is 6 feet, 3 inches tall and the whole lift including tower is 57 inches wide, weighing 385 pounds. It is rated for a load of 750 pounds. The lift must be picked up from the house in Springfield, Illinois, where it is currently located. For more information contact Anna Zelinske, 314-432-7257 ext. 237 or azelinske@alsastl.org.

FOLLOW US ON SOCIAL FOR THE LATEST

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.

ENROLL IN THE NATIONAL ALS REGISTRY

Because learning about ALS is an important step in the battle to defeat it, the federal Agency for Toxic Substances and Disease Registry (ATSDR) has developed the National ALS Registry to gather confidential health information from people who are living with the disease.

The National ALS Registry collects information to help researchers learn more about who gets ALS and what causes it. The Registry collects, manages and analyzes data about persons with ALS so scientists can look for disease pattern changes over time and help identify whether there are common risk factors among persons with ALS. Additionally, the Registry provides updated links for participant resources like ALS clinical trials.

Please visit the ALS registry website at www.cdc.gov/als to enroll in the registry and begin completing the survey modules that will help advance the search for the cause, treatment, and a cure for ALS. To receive monthly updates about the Registry, subscribe here: https://public.govdelivery.com/accounts/USCDC/subscriber/new?topic_id=USCDC_1390.

CHAPTER EVENTS

ICE BUCKET BASH

Join us Friday, November 15 at the Marriott St. Louis Grand and celebrate the five year anniversary of the Ice Bucket Bash and the national phenomenon that put ALS in the public eye and inspired this event, the Ice Bucket Challenge! You won't want to miss this energetic, ice-themed party that puts St. Louis celebrities in the hot seat and under a bucket of icy cold water. Ice Bucket Bash attendees will experience fun, interactive elements for guests to explore. Enjoy frosty signature drinks and a three-course meal suitable for any ice queen or king! All funds raised from this event will support critical programs that improve the quality of life for people and families living with ALS. Among the challenges that come with ALS is the struggle to continue everyday activity in the same way people affected by ALS have done their whole lives up until their diagnosis. With your support, we can change their entire experience with ALS. For more information or to purchase tickets, visit http://bit.ly/IceBucketBash2019, or contact Elizabeth Roe at eroe@alsastl.org or 314-432-7257 ext. 226.

Thank you to our presenting sponsors World Wide Technology and The Steward Family Foundation.

SWING FOR A CURE GOLF TOURNAMENT

Despite the heat we had a great time August 19 raising funds and awareness for The ALS Association. Golfers enjoyed playing at the prestigious Sunset Country Club followed a dinner and auction. We raised over $80,000 with 126 golfers taking part in this year’s event. A round of golf was followed by a moving evening featuring Terry Swinnen sharing his journey with ALS. Our sincere appreciation and thank you to our sponsors, participants, golf committee, and the event day volunteers for their involvement, generosity and support at this year’s Tournament we could not accomplish this without their dedication and support.
 
Thank you to our Sponsors: Associated Bank, The Family and Friends of Wayne Barber, Sr., Permobil, Alliance Rehab, Aero Charter, Lockton Midwest / Healthcare Division, Barber Murphy Group, GFI Digital, John Rothkopf, Numotion,, RN Services Private Duty Care, St. Louis Trust Company, Wine-Tapa, Wood Financial Group and Wolff and Taylor PC.

9th ANNUAL KIMMSWICK 5K

Thank you to everyone who joined us on Saturday, August 17 in historic Kimmswick, Missouri, for the 9th Annual Keep Your Eyes on the Pies Kimmswick 5K, presented by the Blue Owl Restaurant and Bakery. We raised over $25,000 and had over 500 people gathered together on a mission to fight ALS in memory of Nancy Ratliff and everyone affected by ALS.

This event wouldn't be possible without the support of our amazing sponsors—presenting sponsor The Blue Owl Restaurant and Bakery, Jefferson Country Running Club, Ariix/TrueStar Health, Home Service Oil, The Material Works, Peggy Swisher & The Christmas House, Town of Kimmswick, Brockmiller Construction, Precision Dental, and First Baptist Church of Arnold.
 
Again, thank you and we hope you will join us for next year’s Kimmswick 5K. Through your participation, you are helping us create a world without ALS.

2019 WALK TO DEFEAT ALS®—ST. LOUIS

A big thank you to everyone who came out on Saturday, June 22 for the 20th Annual Walk to Defeat ALS despite the rain and thunderstorms. If you were not able to attend and you need to turn in donations, they can be mailed to the ALS Office at 2258 Weldon Parkway, St. Louis, MO 63146. Please be sure to include a note with your name and team name. The website is still taking donations as well.

Thank you to our event sponsors Dowd Bennett, Permobil Cares, Raymond James, Compassionate Nursing Services, Numotion, Southern Bus & Mobility, United Access, The Family of Ray Van de Riet Sr., Missouri Foundation for Health, Alliance Rehab & Medical Equipment, Bethesda, and Wells Fargo Advisors.

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:

WINE WALK 2019
Sip, taste and listen to live music at the first ever Wine Walk presented by 14 Hands at Ballpark Village on Saturday, October 5. Enjoy live music at our brand new outdoor plaza, Budweiser Brew House Beer Garden, and inside FOX Sports Midwest Live! while tasting wine and small plates at each of the participating venues. Your ticket purchase supports The ALS Association St. Louis Regional Chapter, discovering treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest. *Must be 21 years of age or older to attend. For more information or to purchase tickets please visit: http://bit.ly/2KPkElc.

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.

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