By Josh Rogers, Senior Vice President & Partner, FleishmanHillard
A few weekends ago, I was jogging past Steinberg Rink in Forest Park and I remembered the first Walk to Defeat ALS® that I attended. The Walk started and finished at Steinberg. That was 2005 or 2006, I think. I participated in two Walks at Steinberg. Then the event shifted to the Forest Park Visitor’s Center. And this year, we’re moving again to the upper Muny parking lot.
Each location to date has served us very well as the event has grown. And I know our new spot will be great too. Forest Park is such a wonderful institution … it’s impossible to go wrong with an event in the park.
As I ran by Steinberg, I thought about how much has changed since my first Walk. Sadly, my friend Craig Thomas, the reason I walked in the first place, lost his battle with ALS and is no longer with us. As is the case with countless others, unfortunately.
There’s been a lot of good change too, though. We’ve had the Ice Bucket Challenge, which raised millions for the ALS Association. Those funds have resulted in advances in advocacy, patient care and research, including the introduction of Radicava as a treatment for ALS patients. And there are three other drugs in advanced stages of development as a direct result of the Ice Bucket Challenge, holding promise for those with the disease and those who will be diagnosed in the future.
But just as there’s been change, a lot has remained the same. ALS is still fatal. Every 90 minutes, someone loses their ALS fight, and someone new is diagnosed with the disease. For these reasons, it is important that we continue to walk … to fundraise, to advocate and to keep up the fight.
That’s why I’ll be back this year … and every year hereafter until we find a cure. Whether at the Muny or somewhere new. As long as I’m able, I will walk. I hope you will too.
Josh Rogers currently serves as the Vice Chairman to the Board of Directors for The ALS Association St. Louis Regional Chapter, and will take the helm as Chairman of the Board February 1, 2019. Josh has been a dedicated volunteer for six years, in both an advisory capacity providing strategic support and planning for our organization as well as serving on numerous local and national ALS board and event committees.
By Maureen Barber Hill, President/CEO of The ALS Association St. Louis Regional Chapter
Although I think of my dad often, Father’s Day always brings with it a special pang of sadness. It’s been 25 years now that I have not been able to spend Father’s Day with him — he lost his battle to ALS in September of 1992. As the years pass I think I will always feel like a part of me will always ache – like I’m missing something, but more so someone, especially around those pivotal moments of my life and my children’s lives. My kids never got the opportunity to know what a great man he was. My daughter Meghan was only four years old and my son Michael was just seven days old when ALS took their grandfather from them.
Over the past 25 years he has been missed tremendously, but I think he would be proud of the fact that my family continues to carry on his legacy, fighting against the disease that took his life, working to increase awareness and raise funds for ALS care and research. My mom, rest her soul, made sure of that! She and Dad really enjoyed playing golf and so our family started “The Wayne Barber Memorial Golf Tournament” as a tribute to my father and so that we could give back to the ALS Association. This event was our revenge on ALS! We knew firsthand that this disease was a relentless monster and we wanted to do what we could to help and support others going through an ALS journey and help find a cure.
My family organized and ran the tournament for ten years, but eventually we came to the conclusion that the event needed to grow – so that it not only memorialized Dad, but celebrated the lives of other people with ALS and their families. In 2005, we handed the event over to The ALS Association St. Louis Regional Chapter, who adopted it as one of their primary fundraisers, renaming it The ALS Association Annual Memorial Golf Tournament.
Twenty three years later the fight against this disease continues, but with a growing sense of hope. Just last year, the first new treatment for ALS in two decades, Radicava, was approved by the FDA, and five new genes responsible for contributing to the disease have been identified since 2014. Because of these advances, the decision was made to rename the golf tournament, “Swing for a Cure” to emphasize our organization’s commitment to ending this disease once and for all. My family remains very involved in this event — held every August – which has raised over $1.5 million dollars since its inception.
So with another Father’s Day approaching I ask myself the same questions I have asked for 25 years. How do I honor my dad? The answer may change as I grow older, but one thing I know for certain is that I, along with my three brothers, their wives, our children and great family and friends, will continue our commitment to fight ALS until there is a cure. Until then, you will find me — and my family — at the Swing for a Cure Golf tournament, where I know we all feel closest to my dad and where we can celebrate his legacy.
I will be on the course swinging my club for a cure because I know firsthand that watching someone you love fight a terminal disease is one of the hardest things you can go through in life. It saddens me to know that hundreds in our region will receive an ALS diagnosis this year, and that their loved ones will face the heartbreaking task of saying goodbye all too soon. My dad was a hero in my eyes – he fought ALS with incredible strength and courage. And my mom was certainly a hero as well — as his primary caregiver she often neglected her own needs to ensure that Dad was well cared for.
Despite knowing that there was no cure for ALS, I was still not prepared to lose my dad at the age of 35. As I grow older no matter whose love gives me happiness I will always by my daddy’s little girl. I miss you so much Dad.
When you attend a Walk to Defeat ALS®, you’ll be surrounded by hundreds of people who have been touched by this disease, each with their own story of how ALS has impacted their lives. Some are still fighting, and complete the route in their wheelchairs, next to an army of supporters cheering them on. Some have lost someone special to the disease, but are committed to continuing the fight in memory of their friend or loved one. All are warriors in the fight to defeat ALS.
Chatham, Illinois resident Ben Rudin was just 40 years old and the father of two young sons when he was diagnosed with ALS. He and his wife, Rebecca, participated in the Springfield Walk to Defeat ALS®, forming a team of family and friends to walk in support of a cure and to fund care for people living with the disease. An avid music lover and fan of the musical group, the Drive By Truckers, the family named their team, Truckin’ with Ben.
Ben lost his battle with ALS in 2014, but Team Truckin’ with Ben still celebrates his memory through the Walk to Defeat ALS® in Springfield. Rebecca recently shared her story about why the Walk is so special for their family and why this year will be bittersweet for them.
“After experiencing some wrist and hand weakness during the summer of 2011, Ben decided to go to the doctor with what he thought was carpal tunnel syndrome. At the initial visit the doctor couldn’t decide whether or not to send him to an orthopedic specialist or a neurologist. After spending about 10 minutes with the orthopedic doctor, she sent him to the neurologist who spent a lot of time looking at his nerves and muscles. Ben spent the next six weeks having tests, including EMG’s and MRI’s, and on October 24, 2011 was given the diagnoses of ALS or Lou Gehrig’s disease. Because there is no single test for this disease we were told to be guarded with this information until additional tests could be conducted to confirm the diagnoses. That was a very trying and hard 6 months. Our two young boys Elijah and Liam knew that there was something going on, but until we got the confirmation we didn’t put a name to it. Rather, we decided to start doing bucket list activities as a family.
The Rudin Family has been participating in the ALS walk since 2012. During the Springfield walk that year, Ben, the boys and I were in Hawaii making lifelong memories. Our extended family and friends walked for us. When we returned we decided that we would walk at the St. Louis walk. Ben was one of the ribbon cutters – another memory that will never be forgotten. That year he was able to walk the entire route of the walk. At the ALS walk in 2013, we walked in the rain at Washington Park. Family members took turns pushing Ben in a wheelchair because he quickly became fatigued when walking. In 2014 Ben was in his power wheel chair and was determined to do a lap all on his own. The Truckin’ with Ben team had over 300 registered members that day. Following the walk everyone celebrated Ben with a banquet that friends planned. It was an amazing day and lots of pictures were taken. Ben passed away four days later. The strength he showed us on that day will never be forgotten.
This year the Walk has a bit of extra special meaning. The walk is on Father’s day weekend and this is our fifth father’s day without Ben. It’s always a bittersweet day as the boys and I reminisce about all the things we used to do with dad. We typically go out to his memorial at Southwind Park and then grill out his favorite meal of hamburgers. This year also marks Elijah’s (our oldest) 18th birthday and high school graduation. He is following in his dad’s footsteps and attending Illinois State University to study actuarial science. Ben worked for insurance companies and instilled the love of math in his boys.
It’s never easy to lose a loved one, but the ALS walks have helped us remember and celebrate a life well lived. We miss Ben terribly and know that he watches over us every day.”
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!
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.
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.
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!
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!
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.
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.
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!
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.
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!
Tomorrow, more than five hundred advocates will gather on Capitol Hill in Washington, D.C. for National ALS Advocacy Day. ALS advocates from all around the country will meet with members of Congress to share their stories and educate legislators about the importance of continued funding for ALS research and patient care.
Through the efforts of ALS Advocates, more than $1 billion in federal funding has been generated for ALS-specific research since 1998. In fact, ALS Advocacy efforts have been responsible for many legislative victories, including securing veterans benefits, enacting the ALS Registry Act, appropriating funding for caregiver relief and the ALS Research Program at the Dept. of Defense, and passing the Medicare waiver.
One of those advocates who will be making her voice heard is Pattie Hamlin of Nokomis, Illinois. Pattie, who was diagnosed with ALS two years ago, and her husband Lester, will be participating in ALS Advocacy Day for the second year in a row. She shared with us her thoughts on her role as an advocate for people with ALS:
“When I was diagnosed with ALS September 2016, the only experience my family and I had had with ALS was participating in the ALS Ice Bucket Challenge. To learn that I had a disease that would slowly lock me into my own body, was devastating. Depression hit hard. An ALS Association care services coordinator came to visit. She explained some of their services and asked what I needed. I told her many of my friends wanted to help me, but there was really nothing that they could do to help me at this point. She suggested that I ask them to sign letters to the congressman requesting continued funding for ALS research.
Somehow over the next week this just got me out of my funk. I started asking everybody I knew to sign the letters, I asked my friends to ask their friends to sign the letters. We ended up with about 3000 letters for each of my congressmen. A side benefit to this effort was that I was able to teach many people about the effects of ALS and the fact that there is no cure.
The ALS Association of St. Louis asked me later if I’d like to go with them to Washington DC to advocate directly to my legislators. My husband and I went to Washington, D.C. that May, we were able to meet many people with ALS and their caregivers. It was a great experience to know others that were dealing with the same things that I was. In Washington we learned a lot more about what’s going on in the area of research for ALS.
We spent one whole day on the Hill meeting with legislators or their representatives and explaining the importance of continued research. Many people don’t realize it but if you were in the military you’re twice as likely to be diagnosed with ALS as other people; this makes it even more important that we find a cure. My husband and I look forward to going back this year to meet up with the friends we made last year and to advocate for continued research in finding a cure.”
Even if you can’t be in Washington DC tomorrow, you can make your voice heard. Help us send Congress a unified message that we will not stop until we have a cure for ALS – post, tweet, email or call your legislator and tell them to support people with ALS and their families! And visit our ALS Advocacy Action Center to learn more about our legislative priorities and how you can become a virtual advocate in support of legislation that advances the search for treatments and a cure.
May is ALS Awareness Month, an opportunity to focus the public spotlight on ALS and gather support for people currently fighting the disease, as well as the search for treatments and a cure. Many people don’t fully understand the impact an ALS diagnosis has on a family, so May is the perfect time to get people talking about what ALS is and what’s necessary to end it once and for all. Here are a few ways you can raise awareness in your community:
1. Write a letter to the editor of your local newspaper and help educate readers about ALS and the critical need for support.
3. Post some facts about ALS on your social media accounts. Ask your friends to share it! Update your Facebook profile with the ALS Awareness frame and recruit your friends to like our Facebook page and follow this blog!
4. Tell a friend. Tell a neighbor. Tell a co-worker. Start a conversation about ALS and help people understand the impact of an ALS diagnosis. Share your story.
To help you spread the word and raise awareness about ALS, visit our website where you’ll find lots of information on this disease, as well as different ways in which you can support care, fund cutting-edge research and advocate for ALS-related issues.
Thank you for lending your voice to the fight against ALS this month to help bring awareness and understanding of this devastating disease!
The National ALS Registry is the single largest ALS research project ever created and the only population-based registry in the U.S. The registry collects information and demographics on people with ALS, connects patients to clinical trials, and funds ALS research. The purpose of the registry is to learn more about who gets ALS and what causes ALS. This will hopefully give scientists a more complete understanding of the disease and enable them to find a cure.
The National ALS Registry also includes a Biorepository that stores samples for future research.
Recently, the Registry was used for the first time to recruit patients and caregivers into a landmark patient-focused drug development survey that captured important information on the burden of ALS across multiple dimensions, including: symptom experience, quality of life, health care resource utilization, and emotional well-being. Other important advances made possible by the ALS Registry include attaining a 96 percent enrollment rate for registrants to be notified about ALS research opportunities (more than 100,000 such notifications being sent for over 30 clinical trials) and research funding for 13 institutions to examine what factors may contribute to ALS. ATSDR recently released the third report on the results of the data gathered by the National ALS Registry. You can read the report here.
If you are interested in joining the National ALS Registry or learning more about the latest news from the Registry, please visit https://www.cdc.gov/als/.
It is vital that the National ALS Registry continues to be fully funded. Congress has started work on the Fiscal Year (FY) 2019 appropriations process and Representatives Eliot Engel (D-NY) and Peter King (R-NY) are circulating a bipartisan Dear Colleague letter in the House of Representatives (see it here), urging their colleagues to support $10 million in funding for the Registry. The deadline for this letter has passed, but there is still more you can do to help make sure your Representatives are aware of the importance of issues affecting people with ALS.
Visit the ALS Association’s Advocacy Action Center to learn about the latest updates and news about legislative and regulatory issues being addressed by The ALS Association and to sign up to receive alerts when your action is needed to support people living with ALS.