ALS Ice Bucket Challenge Progress

 

CHAPTER NEWS

ALS AWARENESS MONTH

May is ALS Awareness Month, a time dedicated to raising awareness and understanding the impact an ALS diagnosis has on a family, sharing information on how this disease works, and advocating for people with ALS and their caregivers. Throughout the month we’ll be posting on our blog ALS-Connect.org and Facebook, Twitter and Linkedin with facts and information on ALS. We hope you’ll take this opportunity to raise your voice for everyone affected by ALS by clicking, reading, and sharing with your networks. To learn more about how to get involved in the fight against ALS at our website www.alsa-stl.org.

JANE CALMES ALS SCHOLARSHIP FUND

Attention students! We have a new opportunity for those who are seeking higher education called the Jane Calmes ALS Scholarship Fund. Up to $5,000 per year will be provided for at least 30 students whose finances have been compromised by the burden of ALS. This new fund was established by Mark Calmes in honor of his wife, Jane, who bravely fought ALS for eight years. In addition to being the vice chair of the Association’s National Board of Trustees, Mark continuously supports people with ALS locally at our Chapter and he recently joined our Board of Directors. We are incredibly fortunate to have Mark in our region! Learn more about the scholarship fund at alsa.org/CalmesScholarshipFund.

NEW CARE SERVICES COORDIANTOR

Mary Love, MS, RD has joined the ALS Association St. Louis Regional Chapter as Care Services Coordinator. Mary is registered dietitian with a Master’s in Community Nutrition from Eastern Kentucky University. Her career started in clinical nutrition support working with patients of all ages with feeding tubes and enteral nutrition needs. Since moving to St. Louis in 2016 she has worked in Medical Nutrition Sales, continuing to work with supplements and in the healthcare field. With her educational background in community programs and support she has always wanted to work for a non-profit. Mary is honored to join the staff and serve patients and families affected by ALS in the Central Illinois region.

gALS RECRUITING NEW MEMBERS NOW!

What is gALS? It’s social and philanthropic group comprised of women who are former caregivers of family members and are united by a dedication to support people with ALS and their families. The gALS are committed to raising money to help The Chapter with special projects to address needs for those living with ALS. These women engage friends, family and others in the community to answer a specific call to action to fill a specific unmet need for patients and families who are battling ALS. On top of everything else, they like to have fun and get together for social dinners. gALS meet at a minimum bi-monthly working closely with the President / CEO who is part of the club.

The gALS have upcoming events, including a Girls Night Out/Trunk Show, Thursday, June 27, 4 - 7 p.m. at Mister Guy Ladies’ Clothiers, Ladue, and a Community Garage Sale September 21. More details soon!

Want to be part of gALS? For more information contact Maureen Barber Hill at mhill@alsastl.org.

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

MARK YOUR CALENDAR FOR THE 2019 WALK TO DEFEAT ALS®

ST. LOUIS

Saturday, June 22 | Forest Park

Join us for the 20th Anniversary of 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 $110,000 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 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.

SPRINGFIELD, IL

Saturday, June 15 | Southwind Park

Join us in Springfield, IL for the 2019 Walk to Defeat ALS. There will be a 1-mile walk along with food, music, entertainment and silent auction. To register visit to WalkToDefeatALS.org. Questions or need help signing up? Please contact Andrea Flanigan at aflanigan@alsastl.org or 314.432.7257 ext. 231.

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.

9th ANNUAL KIMMSWICK 5K

Keep your eyes on the pies and join us for the 9th annual Kimmswick 5K (5K run and 1-mile walk and fun run) on Saturday, August 17, at the Blue Owl Restaurant and Bakery! Run through historic Kimmswick and along the Mississippi River, the Anheuser Estate, and the Windsor Harbor Bridge (the oldest known wrought iron bridge in Missouri). The Blue Owl's famous Levee High Apple Pies will be awarded to the top overall male and female finishers, and fresh fruit pies will be awarded to the top three in each age group. Hang around post-race for attendance prizes, refreshments, a 50/50 raffle, music, shopping in Kimmswick, and more! Visit the website to register or make a donation http://web.alsa.org/kimmswick5k. Questions or need help signing up? Please contact Andrea Flanigan aflanigan@alsastl.org 314-432-7257 ext. 231.

Thank you to our sponsors Ariix/TrueStar Health and Brockmiller Construction.

SWING FOR A CURE GOLF TOURNAMENT

In its 24th year, this annual tournament features 18 holes of golf, lunch on the patio and lots of great prizes. Once again golfers will be able to enjoy a round of golf at Sunset Country Club, one of St. Louis’s most exclusive private clubs. Join us on Monday, August 19, registration and driving range open at 10:30 am with a noon shotgun start. Talk about your game with friends afterward while you enjoy cocktails, dinner, a live band and an extensive silent auction. You’ll also hear from a person with ALS and learn how your golf game makes an impact. You can find out more information online at http://alsa-stl.org/golf_tournament. Not a golfer? You can purchase tickets to our dinner auction only. For more information 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:

ALS AWARENESS NIGHT AT RENT ONE BALLPARK SOUTHERN ILLINOIS MINERS
Save the Date for ALS Awareness Night on Sunday, July 14 at Rent One Ballpark. More details to follow soon!

BENTON AMERICAN LEGION/VFW ALS ICE BUCKET CHALLENGE
Save the Date for the Benton American Legion Ice Bucket Challenge on Saturday, August 3. More details to follow soon!

ITALIAN OPEN
Save the Date for the St. Louis Italian Open Golf Tournament for Children’s Charities. The gala dinner will be held on Saturday, August 3 at the Sheraton Chalet at Westport and the golf tournament will be held on Monday, August 5 at the Legends Country Club in Eureka. More details to follow soon!

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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