Walk to Defeat ALS – ALS CONNECT

Get Involved in the Fight Against ALS

May is ALS Awareness Month, a great time to get involved in the fight against ALS. In an earlier blog post, we told you a little about how you can be a voice for families living with an ALS diagnosis by becoming an ALS Advocate. This week, we want to introduce you to some other ways you can have some fun and make a difference!

FUNDRAISING EVENTS

Are you an outdoor enthusiast? Prefer a party? Whatever your interest is, we have an event for you! The Chapter hosts four major events a year – The Walk to Defeat ALS®, the Swing for a Cure Golf Tournament, the 5Kimmswick Run, and the Ice Bucket Bash. Additionally, there are numerous Community Partner events – fundraisers organized by friends and family members – that take place throughout the year. Participation in any of these meaningful activities means more support and awareness for local people and families battling ALS.

WALK TO DEFEAT ALS®
The St. Louis and Springfield, IL Walks are our largest events. Most people who attend a Walk to Defeat ALS® tell us it’s like no other walk they’ve been to. There are smiles, tears and most of all an overwhelming sense of hope and community. Bring your family, your friends and your co-workers and Walk to Defeat ALS! Sign up as a walk team, an individual walker, or simply come out to support and be supported by hundreds of new friends who are determined to find a cure for ALS. Learn more about the Walks in June.

IMG_3239E — Walkers cross the finish line at the 2017 Walk to Defeat ALS.

SWING FOR A CURE GOLF TOURNAMENT AND DINNER AUCTION
Enjoy golf or know someone that does? Then come out to our annual golf tournament and dinner auction! This event gives golfers the opportunity to support people with ALS and their families in a fun and engaging day on the greens. Both golfers and non-golfers alike are invited to enjoy the evening happy hour and dinner auction. Click here to learn more about this event coming up on Monday, August 20.

IMG_4798E — We always have fun on the greens at the Swing for a Cure golf tournament!

5KIMMSWICK KEEP YOUR EYES ON THE PIES
The Blue Owl Restaurant and Bakery and the ALS Association present the ever-popular, 5Kimmswick Keep Your Eyes on the Pies! This 5k race and 1-mile walk or fun run is held in historic Kimmswick, MO and comes complete with lunch, beer and yes, the chance for race winners to take-home a mile-high apple pie. Registration is open now for the 2018 5Kimmswick on Saturday, August 18, 2018!

Come for the run and stay for the pie – all while you support the search for a cure for ALS!

ICE BUCKET BASH
The Ice Bucket Bash is a fun, energetic dinner party that puts St. Louis celebrities on the hot seat…err the cold seat! Guests enjoy a three-course meal while five notable St. Louisans take the stage. Guests then pledge donations to see the celebs take the Ice Bucket Challenge right before their eyes. Save the date for November 16 at the Four Seasons Hotel St. Louis!

At the Ice Bucket Bash, Keeley Companies CEO Rusty Keeley takes the Ice Bucket Challenge to support of families living with ALS.

COMMUNITY PARTNER EVENTS
Put your own creativity to work and engage the support of family and friends by planning your own community partner event! We’ll give you tips and supportive materials to help you create an event that showcases your idea of fun. Events can take a number of forms, including but not limited to, golf outings, bike rides, auctions, trivia nights, raffles, walks or runs. The options are endless! Click here for more information about hosting your own event.

FB_IMG_1474784839558 — From trivia nights to ice bucket challenges, lemonade stands or car washes, become a community partner and plan your own event to help support the search for a cure!

VOLUNTEER

Care to put your talents to work and donate your time instead? We’ve got a number of volunteer roles that help you make a difference and fit your schedule. There are one-time as well as long-term opportunities for individuals, groups and organizations.

COMMUNITY LINK
Help reduce stress on a family battling ALS by helping them with errands and other non-medical needs. As a Community Link volunteer, you’ll be matched with a family for weekly, bi-weekly or monthly visits.

PROJECT DAYS
Grab your friends, family or co-workers and plan a day of service for families with ALS. You can help with yard work, help with simple projects around the house, or get your team together and build a wheelchair ramp!

Employees from Swank Motion Pictures installed a wheelchair ramp for the Evans family.

OFFICE SUPPORT
Help us in the office with mailings, data entry, filing and other administrative tasks. We have numerous ongoing and on-call projects available.

SPECIAL EVENT VOLUNTEERS
The St. Louis Regional Chapter holds several fundraising events throughout the year (see above!), including the Walks to Defeat ALS in June and the Swing for a Cure Golf Tournament and Dinner Auction in August.

Judges — ALS Association volunteers make each one of our events run smoothly!

CHAPTER BOARD AND COMMITTEES
Board and Committee volunteers serve an important role in the day to day long term direction of the organization.

Choose the way that’s most convenient for you to get involved in the fight against ALS – attend an event, volunteer, donate – whatever you decide, you’ll be helping people with ALS live life to the fullest while we search for treatments and a cure. Visit our website for more information!

Don and Claire Bratcher: Imagining a World without ALS

ALS Association volunteers are a special breed of superhero — they are the heart and soul of this Chapter. They give up countless hours of their personal time to provide us with all manner of help – in the office, in the homes of people living with ALS, on our board of directors, as public policy advocates, on our committees, at our special events – without asking for anything in return.

So many of our volunteers have been personally impacted by ALS, and have seen up close and personal the devastation the disease brings upon a family. These wonderful people become volunteers to fight for a cure and to ensure that other families are supported physically and emotionally on their disease journey.

Two of those special volunteers are Don and Claire Bratcher, who have been ALS warriors and volunteers for close to 15 years. Claire recently agreed to share their story and we’re delighted to post it here in her own words.

And so my story begins. In 1990, at age 80, my dad, Larry Boberschmidt, Sr., was diagnosed with spinal muscular atrophy and died at age 82. In 1994, at age 55, my sister, Marie Serena was diagnosed with ALS and died at age 57. In 2002, at age 55 my sister, Eleanor Ecuyer, also heard the words, “You have amyotrophic lateral sclerosis (ALS)” – aka Lou Gehrig’s disease – and died at age 57. I then realized my dad probably was misdiagnosed and also had ALS.

The most common form of ALS in the United States is “sporadic” ALS, which means that the disease can affect anyone, anywhere. Our family falls in to the other ten percent of cases – the inherited form of the disease, called “familial” ALS. Families members who fall into this category have a fifty percent chance that they will inherit the gene mutation and may develop the disease.

Familoy members — Family members we celebrate.

Lou Gehrig’s wife name was Eleanor. On July 4, 1939 at the young age of 36, Lou Gehrig announced to the crowd in attendance at Yankee Stadium who came to watch him play, that instead he was retiring from the game he loved because he had been diagnosed with ALS. My sister Eleanor died on July 4th. Coincidence? I don’t think so. Eleanor was probably the most independent person I have ever known, but when you live with ALS, this horrific disease robs you of all of your independence which was, for Eleanor, the most difficult thing about having ALS. She didn’t want to have to depend on everyone for everything. I believe by her death occurring on July 4th, it was a way she showed that she was regaining her independence. Despite all of that, she considered this disease a gift, as it brought people together in prayer who ordinarily would not even speak to each other.

Memory Wall — Our grandson, Shane Hill, looking at our family’s photos on the memory wall at the Walk to Defeat ALS.

In 2003, I decided that I needed to do something more. I knew that I couldn’t waste any more time with negative feelings about what ALS had done to our family, but decided instead to channel those feelings into positive actions. I reached out to the St. Louis Regional Chapter and asked what I could do to help. That is when the Eleanor’s Hope team was formed and we became a part of the Walk to Defeat ALS. I still felt I needed to do more, so I became a part of the St. Louis Regional Chapter’s Walk committee. I didn’t know it at the time, but not only was I becoming a member of this committee, I was joining a fabulous group of people that I now consider my ALS family.

Eleanor's hope 1 — The Eleanor’s Hope Team

The Eleanor’s Hope team continues to walk for those who can’t and will continue to be part of the Walk to Defeat ALS as long as it takes. As the song goes, “I Can Only Imagine.” I would add to that and say that my prayer is “I can only imagine a world without ALS.” I believe we are very close to realizing that dream.

Claire and Don Bratcher
Eleanor’s Hope Team Captain

If you would like to become a volunteer and join a team of warriors dedicated to fighting ALS, please visit our website to learn more about available opportunities.

And, join us at the Springfield Walk to Defeat ALS June 16th at Southwind Park, and at the St. Louis Walk to Defeat ALS on June 23rd at Forest Park.

Why We Walk to Defeat ALS: Team Tammy Hardy

After a six-year journey with ALS riddled with highs and lows, our beloved Tammy lost her life at the age of 39. Yep, 39. You might be thinking, “man, that’s young.” You’re right. It is. Tammy left behind a family and many friends who adored her. For the ninth year, we will once again come together as Team Tammy Hardy in the Walk to Defeat ALS. This is why.

The three voices in this article are those of Tammy’s sisters and her significant other. We share many of the same reasons for walking, including the strong bond we have with each other. ALS didn’t forge that. Tammy did. And it’s a bond that grows stronger each day. Team Tammy Hardy was in place before, during, and after her illness, and we will continue to carry on in her name.

Kelly (Tammy’s Sister)

Tammy was my big sister. She was eleven years older than me, and in many ways, like a second mother – nurturing and fiercely protective. She had the kind of voice you never tired of hearing; a wide smile and laugh that rang like music; and a light in her eyes that I swear must have shown directly from the kindness in her heart. This may sound exaggerated. It’s not. That’s really the kind of person she was – extraordinary. She made you better just by being around her.

Tammy lived her years to the fullest despite ALS. In her own words, “I may have ALS, but ALS does not have me.” But, Tammy was not done living. She didn’t get the chance to be a mother or a grandmother. She didn’t get to meet her nephews. Nor did she get to watch her niece grow. I’m still angry about this, but Tammy never was. She exuded grace and understanding throughout her illness.

Tammy continues to be my role model. I walk because it’s what she would do – not for herself but for every other patient and family. I walk for the thousands of steps she didn’t get to take. For every missed holiday, birthday, and phone call. For all the hugs and kisses she won’t be able to give my son (and there would have been many).

For those suffering from or caring for someone with this wretched disease, I walk. I walk to raise the funds to help you live longer and fuller lives. I walk in hopes that, unlike Tammy, none of your precious moments are stolen.

Keri (Tammy’s Sister)

ALS should be a 4-letter word. It is still a wonder to me how something many people have never heard of can impact so many lives. I really cannot imagine a more horrendous disease. It is the equivalent of being buried alive, drowning, and starving to death simultaneously and all for an extended period of time, even years.

Words cannot even begin to express the admiration I have for my big sister Tammy. She was happy, healthy, witty, full of spunk and personal style, and an avid runner. She loved Cardinal baseball, going out to dinner, having cocktails with friends, and travel. She loved to travel. We made travel plans often; New York, Chicago, Boston, and Las Vegas. I have actually lost count of the number of trips we made to Vegas, and there was always somewhere we wanted to go. Before ALS, I had envisioned we’d be senior citizens still traveling together until our bodies just couldn’t any longer. Never would I have imagined that we’d barely be in our 30s when that happened. I remember her once saying, “We better plan that trip to New York while I can still walk.” Thankfully, we took that trip, and were even able to squeeze in a few others after that with the help of a walker and a motorized scooter.

I feel one of the most devastating things about ALS is the prognosis: lack of medications and no cure. It is excruciating to witness someone suffering with ALS. There is little to no hope and loved ones are often left feeling helpless. All you can do is help them to lead as normal a life as possible. This requires a lot of equipment. For Tammy, this meant a stair lift, a walker, a scooter, a motorized wheel chair, a ramp van, a lift chair, a remodeled bathroom to accommodate her lack of mobility, a few cleverly invented devices, and round the clock man power. Unfortunately, not much of this comes easy or cheap. So for me, this is why I walk. Of course I hope that the money raised will lead to research and a cure … but also the countless other things that may help someone suffering with ALS to have some sense of “life as it used to be” and maybe, even one more trip to Vegas.

Scott (Tammy’s Significant Other)

Let me tell you a few of the (many) reasons why I walk.

I was pulling into Dutch Bros. coffee (www.dutchbros.com), a lovely little drive-through coffee place that dots the Pacific Northwest, when I noticed the sign. It was a fundraiser, they were donating proceeds of coffee sales, and I was several days too late. But what I noticed first, and mostly, was the fundraising was ALS-themed. The barista explained that one of the founding brothers (of Dutch ancestry, not named Dutch) had lost his battle with ALS some years before. And with that, a flood of memories (perhaps a latte memories) came roaring back.

Tammy was a coffee connoisseur. And every morning, regardless of whatever else was on the agenda, coffee was at the top of her to-do list. As her disease progressed, she rigged a setup that provided her easy access to her coffee. Even though she had to sip it through a straw, no matter. It was coffee. It was good coffee. A little creamer. In her Eeyore insulated cup. Coffee was one of those little pleasures that brought an instant of normalcy to an otherwise quasi-normal existence. If you were there with her in the morning, your first action was to get the lady her coffee. And like Jules says in Pulp Fiction, it was the gourmet, er, stuff.

Wine provided another little moment of ordinary in extraordinary circumstances. And yes, she used a straw for that, too. But it didn’t matter. For her, it was a connection to enjoying life, no matter how the disease had ravaged her body. It was also a common bond for us, something to discuss, something to enjoy together, something that we could share outside of the caregiver/patient idiom. Besides, no way was I ever going to watch American Idol!

There’s a picture of Tammy, with her breathing apparatus all hooked up, holding her niece as an itty bitty baby. You can see the light in Tam’s eyes, the sheer joy, the happiness, that this little creature created. As it turns out, we ended up with the greatest niece and the three greatest nephews in the world. My niece is now old enough to ask questions about her Aunt Tammy. That she won’t know her, or be spoiled rotten by her, is incredibly difficult to bear. Soon, the nephews will be asking those questions.

For me, Tam was my partner, friend, and comic foil. Ultimately, I walk to honor Tammy’s brave struggle, her incredible poise in dealing with ALS, and her resolve to find, and live, normal and ordinary. I walk for others facing the struggle. I walk so that one day, no one will have to face these struggles. And I walk for my family, to honor them, to support them, and to share in and pass along the joyous memories of a life too short but fully lived.

You can support people with ALS and their families and the search for treatments and a cure by joining the Walk to Defeat ALS in Forest Park on Saturday, June 24th. For more information or to register, click here.

In It For Life

By Dave Van de Riet

As summertime is upon us, communities all over the country will begin to host the Walk to Defeat ALS. This annual event brings together thousands of people nationwide to walk in honor of or in memory of someone they love. But that doesn’t tell the full story as to what this Walk means.

About 15 years ago, I had the pleasure to meet a lady who was attending the Walk by herself. She explained that her husband had just been diagnosed with ALS and she happened to hear about the Walk on the radio. Other than her husband, she had no family in town and understandably she was very worried about what was to come. But as we walked, she talked about being overwhelmed by the sight of the crowd there that day. She said for the first time since her husband’s diagnosis, she felt that she wasn’t completely alone.

There are so many inspiring stories that are part of each and every Walk. Seeing the hundreds of teams – most proudly wearing colorful shirts adorned with pictures or designs that say why they are there – is always memorable. You can hear the stories sometimes punctuated by laughter, sometimes by hugs and tears. But they are always passionate and meaningful and remind you that we are all in this together. For a disease that can be so isolating, how powerful is that?

Last year, I happened to attend our ALS clinic and was visiting with a husband and wife. The husband had been fighting ALS for some time. But before their appointment began, they wanted to make sure they turned in money that they had raised for the Walk. In the midst of their battle, they were still trying to make a difference – still trying to help others all through the Walk. This is part of the spirit that continually makes the Walk more than just a fundraiser.

The Walks have many teams who are walking in memory of their loved ones. And, sometimes their loved one lost his or her battle long ago. But to these teams, that’s not the issue. The issue remains that people are still suffering. So, these teams gather their families and friends each and every year and strongly say they need to stay in the fight against this disease and stay in it until there is a cure.

Several years back, I was talking with a man who lost his Mom to ALS over 20 years ago. He was telling me about her and how he drifted away from the cause in the intervening years. But he had decided that to honor her, he wanted to join the Walk in Springfield, IL because he had seen some news reports about the event and was inspired to reengage.

As he wiped a tear from his eye, he said he wished he had never left the cause. We told him that all that matters is that he is here now!

The Walk wouldn’t happen without all of the hard work and planning from the ALS Chapter staff and a dedicated group of volunteers. These two groups of people know firsthand how special this event is; how important this event is. For many chapters, the Walks are the single biggest fundraiser and potentially the one time during the course of the year where thousands of people are coming together for this cause. One year at the conclusion of the event, I asked a committee member if he were planning on returning the next year to work on the Walk. He stopped what he was doing, looked at me and said something that was simple but meaningful at the same time. His words were “I’m in it for life”. How eloquent and inspiring his words were and are! They have become the unofficial motto of the Walk staff, committee and the volunteers who are there long before the Walk begins and stay long after it ends. “In it for life!”

So many people are part of the Walk – each with his or her own story or their own reason for being there. Those reasons push them to walk for those who can’t. But there are also many people who can’t be there the day of the Walk but still participate by being a “virtual walker”. These “virtual walkers” register to participate, raise funds, encourage the participation of others and provide a vital role in the success of these events. Recently, there was a couple who was unable to be at the Walk but they still wanted to participate. They were actually in China on Walk day but they had proudly brought their team shirts with them and made sure to wear them while the event was going on at home. It may have been the first time there has ever been Walk to Defeat ALS virtual walkers at the Great Wall of China – another example of the dedication that so many have!

Recently, the Chapter hosted its annual Walk Kick-Off party. This event is meant to start the Walk season and energize new walkers and veteran walkers and share ideas to raise awareness and funds and make the Walk the best it can possibly be. We are always fortunate to have some PALS in attendance. Their presence is always inspiring as they are dealing with so much. Yet, they show up because they too are energized and looking for ways to make their teams and the Walk a success. How can you not step up your own game when you see such passion?

The night of the Kick-Off, I received a message from a wonderful lady who has ALS. She wanted to let me know why she couldn’t be there as she was having a medical procedure. But, she assured me, she would be at the Walk because of how important it is. I’m not sure she understands how much she inspires those around her and is further evidence that ALS will never define her and so many others.

So, as we approach Walk season this year, think of the differences this event can make – the differences YOU can make by joining with those locally and with those across the country. If you are a veteran participant, we say “thank you”. If you are new to the Walk this year, we say “Welcome”! Prepare to be inspired by what you witness and what you feel. The Walk is such a special and wonderful event and together we will strike out ALS.

The Springfield, IL Walk to Defeat ALS is June 10th at Southwind Park, and the St. Louis Walk will be held on June 24th at Forest Park. Register today at www.WalktoDefeatALS.org.

Dave Van de Riet joined the ALS Association St. Louis Regional Chapter’s Board of Directors in 2006 and became St. Louis Walk Chair the same year. Since 2012, Dave has also served as the Board Chair of the St. Louis Chapter. Dave’s Dad, Ray Van de Riet Sr, was diagnosed with ALS in 1995 and passed away in July 2000. The entire Van de Riet Family formed their Walk team – The Globemasters – in 2001 and continue to participate each year in the St. Louis Walk to Defeat ALS.