Every 90 minutes someone in the US is diagnosed with ALS, while someone else passes from the disease. So, every 90 minutes this GivingTuesday, ALS TDI shared the stories of those living with ALS and those who have passed from this terrible disease.
As many may know, New York Yankees first baseman Lou Gehrig was the first person to bring national attention to ALS, and it is commonly referred to as Lou Gehrig's disease. After retiring from the MLB in 1939, he passed only two years later in 1941. And although the nation was so impacted by his passing, the first drug for ALS was not approved until 1996. To this date, there are still only two approved treatments for this disease in the United States.
This #GivingTuesday, we call on you to donate and help our lab fund promising treatments and therapies for those living with ALS. You have the power to change the future of this disease. #EndALS
Donate this #GivingTuesday to #EndALS: www.als.net/donate/givingtuesday/?soc=GT200
"When I was diagnosed in 2009, telling my family that I had ALS was one of the most difficult and heart-wrenching things I have ever had to do. At that time, there was no excitement about potential treatments in the pipeline. There was no hope. It became our family’s mission to help find treatments and a cure for this horrific disease so that someday others receiving this diagnosis would have treatments to fight – or even cure – the ravaging effects of ALS.
We have just wrapped up our 8th Annual Tee Up to CURE ALS golf tournament. 100% of the proceeds from this event go to ALS TDI. They focus only on research for ALS, and we are always filled with hope when we make our annual donation. This year, in particular, we are excited to be able to know that our donation could be used to help get AT-1501, a potential treatment that’s stuck in the research pipeline because of funding, closer to clinical trials!
Over the past few years, we have met other ALS families who have joined with us to fund the cure. We all have similar stories, similar fears, and similar sorrows. We all also have similar hope that a treatment and cure are just around the corner. We hope on GivingTuesday you’ll join us in the fight for a treatment, for a cure, for hope. Because together, we will CURE ALS!" -Paul Tavano
Donate this #GivingTuesday to #EndALS: www.als.net/donate/givingtuesday/?soc=GT201
In October of this year, Patricia "Patti" Olson-Rivera was diagnosed with ALS. When she started showing signs of weakness 2 years ago, Patti knew too well what ALS was but did not want her fears to be confirmed. Patti’s relationship to ALS has a long history having already lost her mother, Olympia to this devastating disease in 1994 followed by two brothers, John in 2005 and Rick in 2013. Her family carries the SOD1 genetic mutation which is associated with ALS. Patti is the youngest of 11 siblings and has two children of her own, each family member deeply impacted by the horrors of ALS.
Despite all of life’s hurdles, the Olson family are committed to raising awareness and funds for research through the Olson ALS Foundation.
Donate this #GivingTuesday to #EndALS:www.als.net/donate/givingtuesday/?soc=GT214
"ALS TDI changed my life last November. Five months after my official diagnosis of ALS and almost one year from the first symptoms, my wife, my brother, and I spent a day in the lab in Cambridge. Robert and Carol patiently answered questions and pulled back the curtain on the science. As someone living with the disease, it meant the world to me that there were people there not just to answer my questions, but striving, every day, to end ALS.
Our visit was a turning point for our family. We realized there was an opportunity to help people learn and do good by sharing my story. ALS TDI has been a foundational part of that story. This October I joined their board. I believe in the work. I believe in the people. I believe that creativity and collaboration are going to lead to a cure. I believe it will happen sooner rather than later. Support makes a difference in this fight – every bit gets us closer to a cure." - Andrew Niblock
Donate this #GivingTuesday to #EndALS: www.als.net/donate/givingtuesday/?soc=GT203
Katherine "Kit" Watson and Mark Robins both live by the mantra, "they have ALS, ALS doesn't have them." This year, both families joined forces as "Team Big Sky" through the #whatwouldyougive campaign to raise awareness and crucial funds for ALS research. The Watson family got involved in the fight to end ALS after Kit was diagnosed with Bulbar-onset ALS in April 2016. The Robin family's battle with ALS began with Mark's diagnosis in September 2016.
Kit, affectionately known as "Koko" by her grandchildren, lives in Sonoma, CA with her husband and adorable dog Roxie. She loves spending time in Big Sky, Montana, cooking, and hasn't let her diagnosis stop her from writing a cookbook with all her favorite recipes to share with family and friends.
Mark and his wife Jackie have 3 sons and own the The Hungry Moose Market and Deli in the community of Big Sky, Montana. Mark's ALS diagnosis may have robbed him of his ability to mountain bike and travel, but he isn't letting it break his spirit. He is determined to live life with a sense of gratitude and endless amounts of laughter and love. He continues his passion for writing through his blog "MarkyMoose In Big Sky".
Team Big Sky supports ALS TDI because ALS needs a cure and it is the only non-profit devoted solely to research to end ALS.
This #GivingTuesday, donate to #endALSwww.als.net/donate/givingtuesday/?soc=GT207
Rupesh Kotiya is only 41 years old and was diagnosed with ALS in June 2016. He retired shortly after from New York Life Insurance Company and MainStay Investments & New York Life Annuities after 11 years as a Regional Vice President. He and his wife, Siobhan, live in Plano, Texas with their two beautiful boys, Ronan 6, and Keaton 4, who not only entertain him but are the light of this world.
Rupesh graduated from NC State University with a degree in finance and was honored to represent the Dallas financial community at our ALS Warriors of Wall Street event in October.
Donate this #GivingTuesday to #EndALS:
www.als.net/donate/givingtuesday/?soc=GT205
As the president and CEO of the Glenmeadow Retirement Community for 23 years, Tim Cotz dedicated himself to the residents, staff, and families he worked with. After so many years of service, his retirement date was set for October 5th, and Tim and his husband Ken were looking forward to having time for lots of travel and adventure together. However, just three months before his announced retirement date, Tim was diagnosed with ALS. Now he, and the community he worked tirelessly for over the years, are working together to fight back against ALS.
Donate this #GivingTuesday to #EndALS:
www.als.net/donate/givingtuesday/?soc=GT206
Cheryl Smith has twenty-five cousins in her generation; all but 3 of them have lost a parent to ALS. All her family knows is a life with ALS. ALS is their norm. ALS is a part of their collective legacy. “We’re not victims,” says Cheryl. “We are strong. And we are very close. We have gathered together so often for ALS funerals; these events have helped the family bond grow stronger.”
It was when Cheryl’s older brother Scott was diagnosed six years ago, that she decided to look more closely at the work of ALS TDI. “I had to do something; I realized I needed to look to the future,” says Cheryl. “It was clear that ALS TDI was trying to get out in front of the disease. That made sense to me. It still does.”
Cheryl’s husband Mike is a third-generation hop farmer in Yakima, WA. In 2013, Cheryl and Mike made a decision to try and leverage their connections within the hop growing and brewing communities to help support their efforts to defeat ALS. So they started “Ales for ALS™,” a concept where participating brewers would be offered access to a proprietary hop blend, free of charge. In exchange, the brewers would brew special beers with these hops and then donate a portion of their beer sales to ALS TDI. From 33 participating brewers in their first year to over 140 participating brewers in 2017, the program has grown each year.
Cheryl and Mike want to be a part of the solution; they believe strongly that a treatment and cure will be found at ALS TDI. “I can feel a change,” says Cheryl. “ALS TDI is making a difference. There is real hope on the horizon now, in particular with AT-1501. Everyone who works at ALS TDI is passionate about finding a treatment and cure. Supporting their work just feels right.”
Donate this #GivingTuesday to #EndALS:
www.als.net/donate/givingtuesday/?soc=GT204
When Cory Burell's dad felt the symptoms of ALS 25 years ago, doctors had no idea what was wrong. His dad underwent test after test before ultimately being told he had ALS, passing away just one month after diagnosis. In February of this year, at 34 years of age, Cory began feeling his left foot drop. Instead of the uncertainty that his father was met with, Cory’s diagnosis was quick. Cory now knows that he carries an ALS associated gene.
While Cory considers his ALS progression relatively slow, with his breathing still at 100%, the reality is that there are still no broadly effective treatments or cure for ALS. “Every day a piece of my functionality dies,” he says. “Every day I know it's one less day I'll see my children. Every day I know it's one less day I'll be able to tell my wife I love her unless things change.”
Following hundreds of questions from people who know little or nothing about ALS, Cory is making it his mission to raise much needed awareness and funds for a disease that isn’t as rare as many people think, and can affect anyone.
This #GivingTuesday, donate to #endALS: www.als.net/donate/givingtuesday/?soc=GT208
Larry, Martha and their daughters Natalie and Andrea were held together by one strong unifying force: Martha’s personality. Her positive disposition was something everyone still finds motivation in today. An avid hiker, trailblazer, life coach, and dedicated mother, Martha found her roots in Eureka, CA and established her family in San Diego, and later, San Luis Obispo. The family have different accounts of how long Martha lived with ALS. ALS blurs everything and kills time. Emergency room visits for pneumonia, broken hips and respiratory therapists. Medicare meetings and confused pulmonologists. Jaded clinic professionals. Her allergies turned her joy for nature into a coughing fit.
Martha never admitted defeat and never failed to dance to her favorite song. Every day was a new day and like most other ALS patients out there, her spirit could never be defeated. All the money Larry, Natalie, and Andrea now donate is in honor of Martha’s wishes to fund research and patient care. “At ALS TDI, every dollar donated represents a family, a person, and the opportunity for more time. We invest in ALS TDI so that the next mother, wife, daughter, sister with ALS can continue to spread their love and energy in this world. Thank you, ALS TDI. Your science continues to give Martha a sense of purpose in this world." In loving memory of Martha Olson-Fernandez: February 24, 1963 - December 17, 2012.
Donate this #GivingTuesday to #EndALS:
www.als.net/donate/givingtuesday/?soc=GT213
Erik Clauson is 43 years old and lives in Washington State with his wife, Jenny, and their two children. On November 11, 2016, Erik was diagnosed with "probable" ALS. On December 14, 2016, and then again on January 5, 2017, the top neurologists in Seattle confirmed it. Not probable anymore, but definitive. To say that the diagnosis was a shock is an understatement. He has always been extremely healthy, often the only person in the house who would not catch the never-ending waves of colds his kids brought home from school. Erik would say that was because “you can’t hurt steel,” jokingly comparing himself to Superman. Unfortunately, Erik's kryptonite came in the form of ALS.
In Erik's words, he is "in a war with a silent assassin called ALS. A war that came out of nowhere. A war that experts don’t know how to win. A war where the odds aren't in his favor. A war that he won’t be able to fight alone.” Erik and his family and friends are furiously fighting back against ALS by supporting the efforts of ALS TDI.
Donate this #GivingTuesday to #EndALS:
www.als.net/donate/givingtuesday/?soc=GT210
Collin Hadley is married to his dear high school sweetheart, Emily, and together they have 2 beautiful children; son Connor, 14 and daughter Madeline, 10. When he was diagnosed with ALS in October 2014 he and his family became determined to knock off as many items on their bucket list as possible.
“I gave myself one day to grieve over my diagnosis, then woke up the next day and told myself that I am moving forward to live life to the fullest. I may have ALS, but it doesn’t have me. I plan to create as many memories and rewarding experiences as possible with my family and friends while I still can. My wife dubbed me ‘Curveball Hadley," as she knows how much it drives me crazy when baseball hitters strike out without even swinging at a pitch. Though I have been thrown the biggest curveball of my life with ALS, I’m still swinging for the fences at every opportunity.”
Donate this #GivingTuesday to #EndALS:
www.als.net/donate/givingtuesday/?soc=GT211
"My dad was an Army veteran who was diagnosed with ALS in April 2011. Within a year and a half, he was bed-bound and on a ventilator. He raised me as a single parent and when he could no longer care for himself, I quit my job and became his full-time caregiver. We faced many hardships and struggles but always tried to maintain joy and humor. We participated in fundraisers for various ALS organizations and used our story to help raise awareness of ALS in the Orlando area. I also worked with the VA to advocate for the rights of ALS patients. My father passed away in June 2016. I miss him every day.
I first learned about ALS TDI when I saw a Twitter post about Ales for ALS. I’m not a beer drinker but knew plenty of them. I reached out to a couple local bars to see if they would carry an Ales for ALS beer and ended up hosting a fundraiser at one of the bars. It was an unbelievable experience and I couldn’t believe how easy it was to work with ALS TDI at such a long distance. I was impressed with the organization and how personal they made my experience.
After my dad passed away, I decided to take a trip to Boston to see firsthand how ALS TDI worked. I was blown away, again, by how personal everything felt. Photographs lined the walls, and everyone knew who these people were by name. Watching scientists and administrative staff interacting was wonderful. Getting to tour the lab really gave me perspective on the work they were doing. They felt like a family and for one day, I felt like I was a part of it. Because of my experiences with this organization, I will continue to support their efforts through Amazon Smile, Tri-State Trek, Ales for ALS, and fundraising events." -Anni Altz
Donate this #GivingTuesday to #EndALS:
www.als.net/donate/givingtuesday/?soc=GT212
As a lifelong athlete and lover of the outdoors, my life revolves around hiking, trail running, and traveling the world to see new places. I was surprised and confused when I started slurring my words more than a year ago. At first, I blamed it on some dental work but when it got worse, I began to worry and finally saw a neurologist. Imagine my shock to be told I had bulbar onset ALS.
My research into ALS began in earnest when a second opinion confirmed the diagnosis. My sister and brother attended an ALS Unfiltered seminar in California where they met Jennifer McErlain and Robert Goldstein. They had answers to many of my queries and were always readily available - much more so than the doctors. Jennifer was even kind enough to visit me in my home and spend the time to get to know my husband and me and address all of the concerns that come with an ALS diagnosis.
I am confident that their team is working hard every day to find a cure, through programs like the Precision Medicine Program, and to support people like myself that somehow got this wretched disease.
Donate this #GivingTuesday to #EndALS:
www.als.net/donate/givingtuesday/?soc=GT209
When Arthur Cohen was diagnosed with ALS in 2014, he knew it was crunch time for a cure. So he turned his passion for pickle-making into a way to raise funds for ALS research. Pickals was born. Profits from every jar of Arthur's crunchy, garlicky pickles benefit ALS research organizations, including ALS TDI.
Arthur's brave battle with ALS ended in August 2017 but his legacy lives on. Now, his wife Janet and children, Lucas and Tess, along with countless friends, continue to move the Pickals mission forward. You can help by purchasing his delicious Pickals at pickals.org.
Donate this #GivingTuesday to #EndALS:
www.als.net/donate/givingtuesday/?soc=GT202
Our final story for GivingTuesday comes from Catherine Wolf:
"When I was first diagnosed with ALS 21 years ago, I decided to live my life despite ALS. And to help others with the same disease. I won my appeal for 24/7 nurses in 2005 with the help of a great lawyer. I shared what I learned in Neurology Now and abc.com. My family and I discovered early on that the ALS Therapy Development Institute ( ALS TDI) was most likely to translate research findings into treatments. I particularly like the precision medicine approach because ALS is not just one disease. My daughters established the WolfMom fund (https://community.als.net/wolfmom) to support ALS TDI. I also have a Facebook page on which I post health care news, especially related to ALS (Cathy Wolf public figure). I serve as the patient representative on the VA ALS brain bank steering committee.
The following poem of mine reflects my attitude in life. It will be published in December by Leaves of Ink."
Donate this #GivingTuesday to #EndALS:
www.als.net/donate/givingtuesday/?soc=GT215