ALS Texas

How Friends of Rupesh Are Fighting Back Against ALS

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Siobhan Kotiya describes her husband Rupesh as a people person who is very outgoing. His personality aided him in making many great friends over the course of his lifetime. Now that he’s living with ALS, the Kotiya family and Friends of Rupesh are incredible advocates for Texans living with ALS.

An Unexpected Diagnosis

Rupesh Kotiya grew up in North Carolina and moved to Dallas, Texas fifteen years ago after spending some time in New York. Siobhan is originally from the UK, and after dating long-distance for a while, she moved to Dallas the same year. Today, they are married with two wonderful boys, Ronan who is 10 and Keaton who is 8.

Rupesh first noticed symptoms in his shoulders in 2013. He could not make his normal shots in basketball and it became difficult to do simple tasks. Concerned that something was wrong, Siobhan and Rupesh started to meet with therapists and specialists. Through a gradual process of elimination and second opinions, they unfortunately received an official ALS diagnosis in October 2014.

In that moment, everything changed for the Kotiya family. Their sons were only 4 and 2 years old at the time. Rupesh still had a successful career as the VP of Sales in North Texas and Oklahoma for Mainstay Investments, a division of New York Life. Nothing would be the same, but they would not let ALS get the best of them.

“It was that decision around fight or flight, and we just decided we were going to fight it. We were going to try and do everything possible,” Siobhan shared.

Overcoming the Challenges of ALS

Despite the challenges of a new diagnosis, Rupesh continued to work full time for two years. He had an impressive career as the VP of Sales, and it was only after it became unsafe for him to drive that he retired.

Daily tasks became difficult for Rupesh as his ALS progressed, such as showering and getting dressed. Their family searched for assistive options and they soon connected with the ALS Association of Texas. Rupesh was provided a shower chair from the Equipment Loan Program. From there, the Kotiya family continued to grow their relationship with the chapter and now they are passionate about supporting the ALS Texas Mission.

By the time 2020 came around, Rupesh felt his symptoms more in his arms, legs, and hands. It became more difficult for him to walk without a walker and now he uses a motorized wheelchair. In that same year, his doctor recommended that he have a trach placed and he is now on a ventilator 24/7. Even still, Rupesh doesn’t let that stop him from making memories with his family.

Friends of Rupesh and the Fight Against ALS

Siobhan describes her husband Rupesh as a people person who is very outgoing. Throughout his life, he has made many friends who are now eager to support his ALS journey.

The Kotiya family previously supported other walk events, but after connecting with ALS Texas, they decided to support the organization. “Even though the prognosis is never good and there is no cure, maybe we can be the ones to help find the cure,” Siobhan shared. They joined the Texas Walk to Defeat ALS under the team name, Friends of Rupesh.

“This provided us with the opportunity to support an organization that is not just focused on funding research and finding a cure but also supporting families that are going through it… They provide future hope as well as the day to day support that you need.” Siobhan shared.

Last year, during the pandemic, their goal was to raise only $750 – $1,000. However, by the end of the Walk, they had raised over $14,000 to support the ALS Texas mission. “Everyone just kept giving and giving!” Siobhan shared.

Siobhan hopes that Rupesh’s legacy will have a lasting impact on their two children. Already, their oldest son Ronan, has been inspired by his father. He wrote a book about his father’s ALS journey. “The book is written from the perspective of a 10 year old and aims to provide hope that you can still do many things, e.g., go on holiday, attend parties and most importantly, enjoy life with your loved ones”. What started out as a summer project turned into a fundraiser. Ronan has sold over 600 books and is close to raising almost $7,500 to benefit Texans with ALS.

Ronan isn’t the only one inspired by Rupesh to support the ALS Texas mission. Six years ago, one of Rupesh’s close friends created the “Friends of Rupesh” golf tournament to raise funds for the ALS Texas mission. This year marks the sixth anniversary of this event to honor Rupesh.

These are just a few of the ways that the Kotiya family and Friends of Rupesh have rallied against the fight against ALS. In the last several years, they have raised over $35,000 to support the ALS Texas mission. Their story is a true testament to the power of our ALS community. Those living with ALS and their loved ones are determined to end this disease, and ALS Texas is here to lead the charge.

Why Should You Support ALS Texas?

When asked why others should join the Walk to Defeat ALS, Siobhan answered with confidence. “We are a family that’s going through this every single day and dealing with the challenges that come with it.” She continued, “Having that ongoing support that makes a difference to your life is so important as opposed to just waiting for a cure that unfortunately many won’t see in their lifetime.”

She noted how ALS Texas supports her family with resources like a shower chair. She also discussed how the North Carolina chapter is equipping them with a power wheelchair to use while they travel to the state where Rupesh grew up.

When you join the Walk to Defeat ALS, you not only support research for a cure, but also crucial local care programs. Most importantly, it gives us the opportunity to honor and celebrate Texans with ALS and their families.

Although everyone’s journey is different, we all have one common goal and that it is to rid the world of this horrid disease and to make those who are diagnosed as happy and comfortable as possible.

You can support Texans with ALS like Rupesh this year at the Texas Walk to Defeat ALS! With both virtual and in-person options, you can walk YOUR WAY! Register in the city nearest to you and walk wherever you want on Saturday, October 30. Learn more at alstexas.org/walk. Together we will create a world without ALS!

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Walk to Defeat ALS Hero: Maria G. Sanchez

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Written by Maria’s daughter, Melissa.

Maria was a hero to everyone for many reasons. For her closest family, friends, and mentees it was because they could feel that Maria possessed the ability to see the very best in them no matter what. They knew that her occasional tough love was actually just the frustration she felt from them not living up to their own limitless potential.

Quite literally, she was a hero because she was a registered nurse, a nurse manager at University Medical Center (UMC) in El Paso, and a clinical instructor for The University of Texas at El Paso School of Nursing. She was a go-getter, a leader, and well-respected at the hospital and in her community. Maria was dedicated to patient care, and accomplished many “firsts” for UMC. She was a mentor to many. So much so that her UMC family continues to raise awareness for ALS and joins the Walk every year in her memory.

“She was full of life. We would go out shopping, and she would out-last everybody,” her daughter Melissa says. She always had an inappropriate joke, a Maya Angelou quote, uplifting advice and a prayer ready for any situation and any person that needed it.

Maria worked to instill strong values in her children, Melissa and Francisco, and sparked their desire to give back. Her motto was: “To whom much is given, much is required.” Melissa and her brother saw this in action, as their mother continuously helped family and gave back to her community, never expecting anything in return.

When Maria was diagnosed with ALS in August 2015, she didn’t tell her children or her family until January. She wanted to protect them, as she always did. She took the initial heartache, head on, with only her husband David by her side. She referred to him as her rock and her angel because he stood by her side through every heartbreaking battle so that their children and family didn’t have to worry. And they didn’t because they knew she was in the best hands.

During her battle with ALS, her humor and unwavering faith gave her family peace. Her smiles in photos were bigger than ever. Her daughter believes she did this consciously in order to show her loved ones that not even ALS could destroy her fighting spirit and the love she had for them. Her whole life, she embodied the Maya Angelou quote, “We may encounter many defeats, but we must not be defeated.”

After Maria passed away, her family felt called to honor one of Maria’s final wishes, “Life goes on,” she said, “You have to go on.” There was no better way for them to go on than to honor her life by continuing her legacy of giving back by starting the Walk to Defeat ALS team Maria G. Sanchez’s Warriors and volunteering with the ALS Association of Texas. They have even started reaching out to corporations to help secure corporate sponsorships for Walk to Defeat ALS. Their hope is that their efforts contribute to helping people with ALS and their families in even the slightest way.

“I want to tell people with ALS that you are not forgotten. You are not alone. My Mom at times felt like she was a burden to us, but it is the honor of our lifetime to be there for you in your time of need, just as you have always been there for us. You’re our heroes and you will always be our source of strength.”

Want to get involved and support Texans with ALS like Maria?

Join Maria G. Sanchez's Warriors

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Walk to Defeat ALS Hero: John Lay

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John Lay is a 3rd generation Austinite and a 4th generation Texan with a long history of being active in his community. He served on the Austin ISD school board for eight years and furthered his love for the river by serving on the Colorado River Alliance board for twenty years. Recently, John was bestowed the honor of having their annual River Hero award named after him. Family is everything to John and his wife Jill. Their tight knit family of five children and eight grandchildren must agree, as they all live within three miles of one another. John is outgoing, has never been afraid of a microphone or podium, and his children often joke that they are jealous of their parents’ fun social life and incredible friendships. John often says, “Surround yourself with people that make you smile.”

In early 2018, John started to have weakness in his arm. He consulted multiple doctors and went through many tests in search of an explanation. After no diagnosis had been made, he started to suspect that something serious was going on but didn’t want to worry his children. After a muscle biopsy later that year, a motor neuron disease was indicated. In early 2019, he was referred to Dr. Stanley Appel at the Houston Methodist ALS Clinic, and was diagnosed with ALS. The prognosis for survival with ALS patients is two to five years.

John and his wife Jill sat down with their family and shared the diagnosis without shedding a tear.

“I’m 70 years old, I’ve lived a long great life. Don’t be sad for me. The good news is we know this now and we have time together,” he told his children.

As soon as he was diagnosed, John and his family got to work researching everything they could about the disease and found the ALS Association of Texas. John and Jill joined the monthly support group and his children started their Walk to Defeat ALS team.

At first, John was hesitant to tell his story. He saw people in the support group and at the ALS clinic who were younger, with small children, and in later stages of the disease. When diagnosed, John was in his seventies, at the beginning stages, had watched his children grow to adulthood and have children of their own. He felt fortunate compared to many other patients.

Then John had a thought: “How do we raise awareness for this, not just for me, but for everyone with ALS?” As his children worked on their Walk team, they learned more about ALS advocacy and the work of the ALS Association of Texas. They talked to their dad about the impact of telling his story. John realized that “If my story can help other people and raise awareness, let’s go big for the Walk. I’m ready.”

The Lay family started recruiting friends and family to join Team John Lay for the Walk to Defeat ALS. “Everyone who has ever met our dad just loves him… They would do anything for him,” says his children. More than 150 people walked, 340 donated, and they raised $55,000!

They continued their Walk celebration at an after-party at a friend’s restaurant where John gave a speech.

“This has been the best year of my life,” John said. “The support that my family, friends, and children’s friends have given me has been incredible. This is a journey and I’m on the journey, but as I always tell people, everybody’s got something. Each person has situations with their own family, you just deal with those things, you support one another and keep smiling. I wake up every morning and I’m happy to be here and I try to make the best of each day.“

John was accepted into Dr. Stanley Appel’s groundbreaking Treg trial in March, just when COVID-19 hit Texas and everything shut down. But John was determined. “If I can be part of the science to move the ball forward to slow the progression or find a cure, to be able to contribute that, then I don’t feel like I’m sitting down not doing anything,” he said. Right now, John doesn’t believe he will see a cure in his lifetime. But Dr. Appel’s trial has been shown to slow the progression of the disease, and that could make all the difference for a person living with ALS. John isn’t participating in the clinical trial for himself. He’s doing it to help others in the future. And he believes that if someone is going to find a cure, it’s likely to be Dr. Appel and his team.

The ALS Association funds Dr. Appel’s Treg study and supports the Houston Methodist ALS Clinic, which is why John and his family are passionate about raising funds through the Walk to Defeat ALS.

Since his diagnosis, John has lost the use of his arms. But he has still made it a priority to live life to its fullest. After his diagnosis in 2019, he took a kayak trip down the Colorado River, went to Wrigley Field, and visited the casinos in Lake Charles. Today, he’s spending as much time as possible with his family and friends, which has been challenging during the pandemic.

This year, the Walk to Defeat ALS is going to be much different due to the pandemic. Instead of bringing teams together for one large event, as we have done in years past, teams are encouraged to host their own Walk to Defeat ALS at Home, in the way that works best for them. On October 31, instead of bringing together a team of 150, the Lay family will gather and walk around their neighborhood, at a social distance, walking in unity with the ALS community across Texas.

Fundraising during a pandemic is a challenge, “This is a disease where you can’t sit on the sidelines for a year or two because of the impact of COVID. ALS can’t wait. It’s going to be harder to get federal funding during the pandemic, so it’s going to be things like the Ice Bucket Challenge, the Walk, and individual donations that moves the needle closer to slowing the progression of ALS,” his children say.

John is grateful for his circumstances, which can be a surprising thing to hear from someone who has been diagnosed with ALS. He has chosen to approach this in a positive way, cherishing each day he spends with his loved ones, sharing his story, participating in the clinical trial to move research forward and raising funds so that one day we can live in a world without ALS.

Want to get involved and support Texans with ALS like John?

Join Team John Lay

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Walk to Defeat ALS Hero: Judy Baucom

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Dawn and Shelley have been participating in the Walk to Defeat ALS in Dallas for the past nine years in memory of their mom, Judy Baucom.

Shelley says, “Mom was the most selfless person I’ve known, who always put others first and loved big.  She was a great listener and gave the best advice – my kids still talk about things that she had told/taught them!  Up until the end, she wanted to make sure her family and those around her were taken care of – her concern for others took priority.”

True to her nature, Judy had been taking care of her sister, who was battling cancer, when the first signs of ALS started to appear. She was dropping things a lot, tripping occasionally, and her speech was a bit slurred. But Judy and her family all thought it was due to the stress and exhaustion due to caring for her sister. “It all makes sense now, but at the time she just chalked it up to ‘I’m tired, it’s old age,’” says Dawn.

Judy pushed past her own symptoms and continued to lovingly care for her sister until she passed away in June. Three days later, Judy had a fall and her left side went numb. Everyone thought it was a stroke, due to the stress of losing her sister. She went to rehab, and her family noticed that even with physical therapy, she still was not improving, but instead getting worse. In September, she went to the ER with leg weakness and tremors, and after seeing a neurologist for tests, was diagnosed with ALS.

As soon as her family found out about the diagnosis, Dawn and Shelley researched the disease and signed up Team Judy for the Walk to Defeat ALS in November 2012.

Judy helped design the team shirts for her Walk team. She loved hummingbirds, and included one on the front of the shirt. Her Occupational Therapist, upon learning that Judy was an artist, created a stamp of Japanese characters for “hope” and “strength” that she put on the back of the shirt. He even bought her a watercolor kit so she could continue to paint the hummingbirds she loved.

After her fall, Judy lost the ability to speak, and relied on a small whiteboard to communicate with her loved ones, often writing words of encouragement and inspiration for her daughters. Even in the midst of ALS, she was still caring for others.

Judy’s health declined quickly, and in October went to a hospice facility in Tyler.  She passed away on November 10 – the same day as the Walk to Defeat ALS, and merely six weeks after Judy had been diagnosed. The night before, Dawn and Shelley visited their mom, knowing she did not have much time left, said their goodbyes and told her they were going to the Walk to Defeat ALS. They got the news early the next morning that she had passed away. “She knew we were walking. We always said she wanted to be there with us,” says Shelley.

At the Walk to Defeat ALS, in addition to friends and family, Judy’s nurses, physical therapists, and other people she had briefly met during since her ALS diagnosis, joined Dawn and Shelley. Judy had known some of these people just a short amount of time, but she had made a significant impact on them and inspired them to join the Walk in her honor.

“Mom not only showed strength through this whole process, but beautiful FAITH.  She was continually thinking of others and shared her Faith and Love in the Lord.  What a wonderful Legacy she left behind, and we have been so blessed to have her as our mother and friend.”

Dawn and Shelley have continued their mom’s legacy in the nine years since she passed. Over the years, they have hosted fundraisers for their friends and family, auctioned off Judy’s paintings to raise funds, and hosted a BBQ on Walk day for the Dallas ALS community, all to fulfill the vision of creating a world without ALS.

“ALS is a horrible disease…That’s why we do what we’ve been doing since the morning she passed. Try to raise funds and make sure that those that are still fighting and continue to fight have a chance. And that’s how we honor our mom,” says Dawn.

Want to get involved and support Texans with ALS like Judy?

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Walk to Defeat ALS Hero: Tony Dallas

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Tony Dallas’ family has always been competitive. They are a “baseball family” – Tony had played and coached baseball, and his sons followed in his footsteps. So, when Tony lost an arm-wrestling match to his sons over Thanksgiving, his family didn’t think anything of it. But Tony, being the competitive person he’s always been, was confused, because he typically didn’t lose to his sons. In December, he started to notice more weakness in his arms and went to see his general practitioner. After several doctors’ visits and tests, he was referred to Dr. Stanley Appel at the Houston Methodist ALS Clinic and was diagnosed in July 2019.

Tony is a self-made man. He owns an insurance business in his small town of Orange, Texas where he grew up. He and his wife have been together since the age of 14, and they have worked to create a better life for their children, instilling values of selfless giving. On Thanksgiving, the family always volunteers to help others. He has been very involved in his community, coaching his sons and many other students in baseball and football, serving on boards and finding ways to give back. Tony has supported friends, classmates of his children, and organizations in his hometown, always anonymously. He doesn’t want it to be about him.

Tony’s motto is “Do good things to improve the lives of others, not for self-gratification.”

When Tony was diagnosed, his family wanted to find a way to get involved and spread awareness. “We had no idea what ALS was, we only knew about the ice bucket challenge,” says Leigh Anne Dallas, Tony’s daughter. “ALS either changes your whole world or you don’t know what it is at all, and we wanted to change that.”

Leigh Anne discovered the Walk to Defeat ALS was happening and signed up Team Dallas to participate two weeks before the 2019 Walk. They reached out to their inner circle and started selling shirts to help raise money to go towards their walk team, thinking they would probably only sell a few. They ended up selling 600 shirts and raising $10,000 in two weeks!

The lack of awareness about ALS and supporting their father is what drives Team Dallas. For 2020, they set a goal to raise $13,000, in honor of Tony’s lucky number 13 that was on his baseball journey. They met that goal in a mere six days. Now, their goal is $30,000 (and they’re just about to surpass it!)

The money our team has raised and the community support is the biggest testament to our dad,” says Leigh Anne.

The Orange community has really rallied around Tony Dallas and his family. This year, because of COVID-19, Texas Walk to Defeat ALS events will be hosted differently for each individual team on October 31st. Team Dallas will be holding a mini walk at their local outdoor pavilion and are setting up a Walk route through downtown. Other local families affected by ALS are attending their event as well. So far, they have more than 200 people registered as part of Team Dallas.

During the pandemic, Tony and his family have had to take additional precautions. They frequently sit on their front lawn to visit with friends and family and watch people drive by, still immersed in their community from a distance.

Once you are in this world, the people who are also diagnosed with ALS become a part of your family,” says Leigh Ann.,  “I hope we can do something to honor him always and I hope other families can see you don’t have to let ALS consume you and it doesn’t define who you are as a person.

Tony and his family feel that funds raised through the Walk to Defeat ALS will have a big impact on future treatments and a cure. “Will it benefit him? Probably not. But it will benefit someone else’s family and might prevent them from having to go through this,” says Leigh Anne.

“I hope that we are able to do our part, whether it be through advocacy, or something else, to leave a mark and be there for other families. I hope we can do something to honor him, always. And I hope other people and other families can see that you don’t have to let ALS consume you. It doesn’t define who you are as a person,” says Leigh Anne.

Daddy’s biggest thing has been ‘I will not stop living my life.’’

Want to get involved and support Texans with ALS like Tony?

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ALS Heroes: Jim & Diane Tobin

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Jim Tobin was training for his third half marathon when he began noticing weakness in his hips and right leg – not a good sign for a runner. Two and a half years later, in January, 2016, after many tests, he received the diagnosis that would forever change his life: ALS. 

His wife, Diane, says, “Those three letters sent shock waves through us when we heard them. Suddenly life was different.”

They wasted no time, and decided to travel to Paris, a dream that had long been on their bucket list. Though they had to navigate the streets of Paris with Jim in a wheelchair, the memories they made are something they both cherish.

That trip pretty much sums up how Jim has lived his life as a person with ALS. He is a testament to the fact that just because you have a diagnosis of ALS, it doesn’t mean you stop living and challenging yourself. He has chosen to redefine himself, to live a life that has purpose and meaning. He hasn’t let the disease take his joy.

The Importance of Community

Focusing on community, rather than isolating himself, has been one of the most important ways he’s continued to live his life to the fullest.

“ALS is an isolating disease,” says Diane. “There’s no better way to break down the wall of isolation than to build connections and community,” she adds. 

Jim and Diane have been fortunate to have the support of many friends. Diane says, “Jim made lifelong friends playing tennis and golf and running half marathons. To this day, they are still here for him, dropping by to visit and hosting their men’s breakfast group at our home.”

Hope for the Future

Jim is quick to say, “ALS is not incurable, but it’s a complicated disease. Curing it takes a lot of money.”

It’s that hope for the future that spurs his and Diane’s passion for raising awareness and resources to support others with ALS and to help find a cure. 

While they know they’re fortunate to be able to afford the care and devices Jim needs, they realize others are not. Jim recently was able to get an Eye Gaze machine, making it easier for him to reconnect with friends and family through email, texts and calls. He and Diane want others living with ALS to have access to the same kind of assistive technology. 

The couple believes the ALS Association of Texas helps people with ALS “live their lives in the best way they can.” That’s why for the past three years they’ve participated in the Walk to Defeat ALS in Houston. They and their team raise money for the ALS Association to fund research and support for those living with ALS. One particular program that is dear to their hearts is the ALS Texas equipment loan bank, which allows people with ALS free access to durable medical equipment and assistive technology. Equipment can be very expensive. ALS Texas provides this equipment, easing the financial burden and helping to provide a better quality of life for people with ALS. 

Since Jim’s diagnosis Diane has been inspired by a piece called  What ALS Cannot Do. It’s become the couple’s mantra and has encouraged countless individuals living with ALS and their families. 

“While you have ALS, you are not ALS. It is merely a part of you.”  – Diane Tobin

What ALS Cannot Do

ALS cannot cripple love.

ALS cannot erode faith.

ALS cannot destroy peace.

ALS cannot silent courage. 

ALS cannot suppress memories.

ALS cannot weaken family.

ALS cannot erode the spirit.

ALS cannot conquer the soul.

“Spark Hope For a World Without ALS” – Our 2018 Recap

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In 2018 we set out with the goal to spark hope, ignite action, and inspire others to join us in the fight to create a world without ALS. And it was thanks to our wonderful community that we were able to achieve that goal. Throughout the year we provided patient services, hosted community events, and helped fund life-changing research to find new treatments for this devastating disease.

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Introducing UNLOCK ALS

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The ALS Association Introduces New Mission Integration Concept at the Walk to Defeat ALS

Each year, hundreds of thousands of people across the country bring their determination, energy, and passion to the Walk to Defeat ALS to celebrate the progress made in the search for a cure with the ALS community. This year, we’ll honor our loved ones who are battling ALS and who have battled ALS through our new program UNLOCK ALS.

We’ll celebrate the real possibility of unlocking the mysteries of ALS. Anyone may hold the key to UNLOCK ALS – a fundraiser raising funds for the cure, a person with ALS participating in a clinical trial, a researcher developing treatments, even you.

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ALS Can Never Steal the Joys of Motherhood

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In 2001, Patricia and Oran Hamilton welcomed their son Patrick into the world. As Patricia started this new chapter in her life, she knew that she wanted to cherish every moment of motherhood. Over the years, she watched as her son grew, encouraging his love of learning.

When Patrick was 11, Patricia started experiencing weakness in her hand, and went to a neurologist who gave her three different diagnoses. In March 2014, she was finally diagnosed with ALS.

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The Walk to Defeat ALS: A Community Celebration of Hope

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What does it mean to be a part of the Walk to Defeat ALS? We’ve thought a lot about this question over the last few months.

Participation in this campaign can mean different things to different people, but overall, we think it can be summed up in these three words: Community, Celebration, Hope.

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