A Veteran Talks

“Hey kid, the good days will always outnumber the bad,” he said to me with a kind smile and wink. We were sitting side by side in the infusion center at Massachusetts General Hospital receiving therapy back in early 2002. Bill and I were on the same treatment rotation and had become friends. He had been front and center during the Cuban missile crisis in the Navy. I was currently on active duty as a Navy Nurse in CT. He was receiving the treatment appropriate for his neuro muscular condition. I was receiving it on the slim chance it would help, since one of my lab values was unusual when all other evidence pointed directly to the inescapable ALS. I was 26 years old, scared about the future, sitting next to my fellow veteran, and found his words were of great comfort to me.

Eighteen years later, I find that the good days have always outnumbered the bad and I suspect it will continue to be this way. The bad days have included the shattered dream of having children of my own as my siblings and friends continued “normal life.” The bad days also included the end of a young marriage in a bitter divorce. But, as you know, ALS is relentless in breaking bodies and hearts.

Today, we all find ourselves in unprecedented, turbulent times. This can be very unnerving, especially, when combined with ALS. My partner and I went into strict isolation in mid-March and spent three months together 24/7 as he was my only caregiver. We struggled through the social isolation, my guilt about depending completely on him and figured out how to settle into a new type of lifestyle. Our days now have a simpler rhythm. Watching flowers blossom is a big treat! The garage is not for my van anymore. It is set up for socializing with neighbors and family at a safe distance complete with a screen tent, carpet, lawn chairs and flower pots to line the entrance!

During these turbulent, changing times, I have some good news to share. My partner, Leif, and I got engaged a few weeks ago and are planning a very small ceremony October 3^rd! WHAT??  Who marries a 44 year old woman who has ALS? Evidently, Leif does. We have been living together for eight years and he figured if we could be together 24/7 for three months and still like each other, we might as well give marriage a shot.

I pray that as we all find new paths forward, excavating our former lives, positive things will surface. I am pleased to learn that ALS clinical trials have used the past few months to pivot how trials are run. They are now maximizing the use of video appointments to gather information and reduce in person visits. The field has also shifted to investigating breathing measurements that can be taken at home and doing safety labs locally. These changes bring the possibility of including more people in ALS trials by reducing some of the barriers.

We will all continue to have bad days. Life is just like that. My wish for you is that your good days always outnumber the bad. Keep your heads up and seek out the positive.

Sending my love from NH,

Ellen Corindia

3/13/15
Los Angeles, CA
ALS.net
BASH for Augie’s Quest
Photo Credit: Marvin Steindler/Steve Cohn Photography
© 2015 Steve Cohn Photography
www.stevecohnphotography.com
(310) 277-2054

If you or someone you know has ALS and is currently experiencing symptoms of COVID-19, please contact your healthcare provider immediately.  

With the recent assignation of COVID-19 as a pandemic by the World Health Organization, we are sharing pertinent information with the ALS community to understand the risks and impact of SARS-CoV2. Please note that per the CDC, this is a rapidly evolving situation, and the CDC will continue to share updates daily.

While there is currently no evidence to show that patients with ALS are uniquely sensitive to the virus, individuals with respiratory health issues, chronic medical conditions such as heart disease, diabetes or lung disease, and those who are elderly may be at a higher risk for experiencing COVID-19 severely.

Prevention & Management: 

In addition to following the CDC recommendations for the prevention and management of COVID-19, we recommend asking your ALS clinic care team whether they recommend an in person or tele-visit. You may also find the Les Turner ALS Foundation’s care recommendations for respiratory issues helpful.

The ALS Association has published  “ Tips to Help the ALS Community Plan Ahead During the COVID-19 Pandemic”  developed for people with ALS and their families, to help them advocate effectively with healthcare providers, healthcare facilities, emergency medical technicians and medical transport systems to ensure fair and appropriate treatment during the COVID crisis.

Information Related to Clinical Trials:

If you are currently participating in a clinical trial, contact your trial care team to determine if there are any changes to protocol or timeline.

In an Emergency Situation:

If you are in need of assistance from an emergency medical technician (EMT) please reference this document from I AM ALS for helpful information to provide to them and emergency room staff regarding additional precautions to take when caring for ALS patients.

The CDC and other health professionals are learning more about COVID-19 every day. While the possibility of contracting a contagious disease is scary, it is important to stay calm and follow recommended prevention and management strategies. Please continue to check the CDC’s website for the most up to date information about COVID-19 in the US.

Support Resources

Augie’s Quest, Team Gleason, Les Turner ALS Foundation, I AM ALS, LiveLikeLou, Hope Loves Company, The Joe Martin ALS Foundation, The Brigance Brigade Foundation and others across the ALS community are banding together to support ALS families during this time. We have compiled a list of resources that are providing assistance to families with ALS who are affected by COVID-19. 

Financial Assistance & Volunteer Support:

• The Healthwell Foundation is offering a small grant to help people cover costs related to COVID-19 such as delivery of food, medications, transportation and telehealth visits. Check out the eligibility details here and call (800) 675-8416 to apply over the phone.
• The Susie Foundation in Connecticut has introduced a Good Neighbors program that will connect families affected by ALS with volunteers who will run 1-2 critical errands for them per week. They are also repurposing their Flex Grant program to provide emergency funding to families who are struggling with unexpected expenses due to the spread of COVID-19. Learn more about their programs and how to apply here. 
• The Les Turner ALS Foundation in the Chicagoland area is providing emergency relief funding. Learn more here. 
• The LiveLikeLou Foundation has launched the Great LiveLikeLou Outdoor Clean-Up for ALS Families to match ALS Families with Phi Delts to offer volunteer support to ONLY 1) outdoor projects and chores, 2) no personal contact and 3) CDC-allowable interactions.  This is a “one-time” or “occasional” support for ALS Families so that the college students in particular can meet their families’ expectations for support.

Equipment:

• Your ALS Guide is donating 5,000 FDA-approved surgical masks to people living with ALS, caregivers, and ALS professionals in the United States. People can request masks at Masks for the ALS Community and they will be mailed out within 48 hours.
• Every 90 Minutes, Team Gleason and Evergreen Circuits are providing ventilator filters from Philips Respironics to ALS patients who are unable to get it through a DME supplier. Click here to apply. 
• Team Gleason is continuing to provide all of its services to people living with ALS, with the exception of adventures which have been suspended. Learn about how they may be able to help you and apply for assistance here. 
• Acknowledging that there may be a shortage of some supplies, Respiratory Quality Services researched ways to clean your breathing device accessories. You can read them here. Be sure to consult with your Respiratory Therapist on these guidelines.

Veterans:

• The House Committee on Veterans’ Affairs has helpful information on COVID-19 resources for veterans with ALS here.

Virtual Engagement:

• Hope Loves Company is going virtual! Check out their site for updates on online activities and their upcoming Pen Pal program for children, teens and adults. 
• Team Gleason and The Center for Medicare Advocacy will be hosting a webinar to address benefits in the rapidly changing Medicare environment. Stay tuned for the scheduled date.
• The Brigance Brigade Foundation (BBF) will soon launch the BBF Caregiver Club, which will be a virtual meetup of caregivers of people living with ALS (CALS). The Caregiver Club will encourage CALS to set aside time to practice self-care through guided activities such as art, journaling, meditation, and exercise. Email Amy Mullan at amullan@brigancebrigade.org to learn more and sign up.

Good News:

• Remind yourself about the incredible good in this world by following these accounts on social media:
  • Read Good News Network online and/or follow them on Facebook or Twitter
  • Follow Good News Movement on Instagram
  • Read Upworthy online and/or follow them on Facebook, Twitter or Instagram

Know of a resource to support people affected by COVID-19 that we missed? Email us at AQ@augiesquest.org and we will include it once vetted.

New Fundraising Campaign – Including CKO Punchathon — Kicks Off November 1

Los Angeles, November 1, 2019 – CKO Kickboxing members will put on their boxing gloves as part of a new CKO fundraising drive called “Kick Some ALS” to benefit Augie’s Quest to Cure ALS, a nonprofit committed to changing the experience of thousands living with amyotrophic lateral sclerosis (ALS) by fast-tracking effective treatments and an ultimate cure.

The two-week fundraising campaign launches on November 1 and runs through November 15 at CKO Kickboxing locations across the country. During this time period, CKO Kickboxing makes it easy and fun to donate to this important cause. CKO Kickboxing will also host special CKO Punchathons to “Kick some ALS,” a 90-minute, high energy kickboxing workout, with incentives and prizes. One hundred percent of the $25 class fee will benefit Augie’s Quest.

“ALS robs people of everything fitness and exercise provides including strength, muscle fitness, mobility and more,” says Augie Nieto, Co-Founder and Chair of the Board, Augie’s Quest to Cure ALS and fitness industry icon who has lived with an ALS diagnosis for 14 years. “We are incredibly grateful to have CKO Kickboxing as a new national partner, willing to flex its muscle, join with Augie’s Quest and kick some ALS. Together, ALS doesn’t stand a fighting chance.”

Every 90 minutes someone is diagnosed with ALS, a neurodegenerative disease that attacks the very muscles we work so hard to keep strong, flexible and moving. For people with ALS, as the disease progresses, their motor neurons die off, blocking communication between their brain and their muscles. When voluntary muscles begin to shut down, people with ALS lose their ability to walk, speak, and ultimately breathe. Most people with ALS only live 2-5 years after experiencing the first signs of the disease. Currently, there are no known cures or effective treatments for ALS.

But ALS is curable, it’s just underfunded. Today there is new hope like never before. Thanks to support from national corporate partners like CKO Kickboxing, Augie’s Quest to Cure ALS is helping to fast-tracking new treatments and an ultimate cure. Click here to learn more about the Punchathon.

Event Raises More Than $1.03 Million to End ALS!

Photo credit BE Studios for Augie’s Quest: The award-winning Little Big Town — Jimi Westbrook, Karen Fairchild, Kimberly Schlapman and Philip Sweet — join alongside actor Jay Mohr and Augie and Lynne Nieto before their performances during the 14th Annual Augie’s Quest to Cure ALS Tradition of Hope Gala at the Montage Hotel in Laguna Beach. The evening’s celebration raised more than $1 million to end ALS, with 500 generous donors and friends coming together to support this urgent cause and honor two special ALS champions and area residents – Larry Green and John Duden (not featured in photo) – with the organization’s signature awards.

LAGUNA BEACH, CA, OCTOBER 11, 2019: The 14^th Annual Augie’s Quest to Cure ALS Tradition of Hope Gala at the Montage Hotel, Laguna Beach gathered more than 500 donors, friends, entertainers and businesses to raise the funds and awareness needed to help fast-track effective treatments and an ultimate cure for this devastating disease.

“Little Big Town rocked the house at the Augie’s Quest 14th Annual Tradition of Hope Gala,” said Augie Nieto, Chief Inspriation Officer and Co-Founder, Augies Quest and Chair of the Board, ALS TDI. “Thanks for joining our Quest to #EndALS and helping us raise more than $1 million tonight!”

Additionally, the event was emceed by Actor, Comedian & Best-Selling Author Jay Mohr, whose friend Phil Green (an active member of Augie’s Quest Leadership Council and ALS advocate) is battling the disease. Here, Augie’s Quest also honored two outstanding ALS champions and Orange County residents, presenting Larry Green with its Founders Award, and John Duden with its Courage Award, for their respective personal efforts to help end ALS.

“Inspired night with Augie’s Quest to fight ALS,” posted Little Big Town via its Facebook, Twitter and Instagram pages with a photo of the award-winning band prior to their special performance that night. “Thank you, Augie!”

ABOUT AUGIE’S QUEST TO CURE ALS

Augie’s Quest to Cure ALS is a nonprofit helmed by local fitness industry titan and Corona Del Mar residents, Augie and Lynne Nieto, who have been taking on this disease for nearly 15 years. Augie was the “Steve Jobs” of the fitness industry, a business icon finding career success building the Life Fitness and Life Cycle brands, ushering in popular work outs and new forms of cardio, and getting the masses to hit the gym. Since their ALS diagnosis, the couple has been on a unique quest, rallying family, friends and the entire fitness industry to fund innovative science, effective treatments and an ultimate cure through their nonprofit, Augie’s Quest to Cure ALS. In collaboration with their research partners at the ALS Therapy Development Institute, they have raised more than $150 million to fund essential research and develop treatments and cures.

Because ALS isn’t an incurable disease; it’s only underfunded. Augie’s Quest tireless work has driven innovative science forward at an accelerated pace–including one of the most promising drug treatments yet and a thriving precision medicine program. The quest for a cure is not yet over, but this incredible community is still fighting to end ALS once and for all. Learn more at www.augiesquest.com.

With more than $10 million raised to date, Orangetheory’s partnership with Augie’s Quest marks the largest and most concerted effort to advance promising ALS treatments today

Here, leaders from Orangetheory, Augie’s Quest and ALS TDI gather together to showcase the science made possible by the #AQUESTFORMORELIFE movement and a record total of more than $10 million raised over the three-year partnership.

BOCA RATON, Fla. – June 18, 2019 — Thousands of Orangetheory® members across the United States and Canada raised $4.5 million during ALS Awareness Month for Augie’s Quest to Cure ALS, an organization fast-tracking effective treatments and an ultimate cure for amyotrophic lateral sclerosis (ALS). This year’s record-breaking results bring Orangetheory’s total giving to more than $10 million over just three years, making it the most successful campaign in Augie’s Quest history.

Orangetheory’s $10 million donation has allowed Augie’s Quest to support innovative research being done by their non-profit biotech partner, the ALS Therapy Development Institute (ALS TDI). The ALS TDI lab in Cambridge, MA is fit with Orangetheory’s signature orange to honor the company’s outstanding commitment to fast-tracking science to find effective treatments and cures for ALS throughout the three-year partnership. The funding has been critical in enabling ALS TDI to discover and develop cure-driven drugs, like the promising AT-1501 that successfully advanced to Phase 1 Human Clinical Trials in late 2018; supporting an innovative Precision Medicine Program that provides both ALS patients and scientists with invaluable, personalized information and complex learnings; and significantly driving more drugs into the development pipeline.

“Orangetheory’s commitment, generosity and passion to end this disease – one that attacks the very muscles Orangetheory works so hard to keep strong and healthy – is unrivaled, truly unmatched,” says Augie Nieto, co-founder of Augie’s Quest to Cure ALS and chair of the ALS Therapy Development Institute. “This successful campaign continues to be instrumental in advancing promising ALS treatments. Hands-down, Orangetheory and its nation of committed franchisees, studio members and communities will make it possible for us to #EndALS.”

“At Orangetheory, we’re passionate about helping people live a longer, more vibrant life, and that includes those living with ALS,” says Orangetheory President David Carney. “We want Orangetheory franchisees, staff and members to feel that they are doing things for those who can’t, and we’re thrilled that the entire Orangetheory community has chosen to embrace Augie’s Quest in such a meaningful, powerful way.”

This year’s campaign ran in more than 1,100 studios across the U.S. and Canada from May 1 to May 15. Orangetheory studios challenged their members and each other to donate at least $1 per splat point earned. A splat point is earned each minute a member spends in the Orange Zone or Red Zone. The Orange Zone is the member’s target training zone of 84% to 91% of their estimated maximum heart rate. In addition to its daily schedule of fitness classes, Orangetheory studios also hosted an Augie-thon, a specialty in-studio donation class, across all U.S. and Canada locations on May 11. This unique 90-minute class drew hundreds of members and non-members together, each making a $25 donation.

About Augie’s Quest to Cure ALS: Augie’s Quest to Cure ALS is a nonprofit committed to changing the experience of people living with ALS by fast-tracking cutting-edge research to advance effective treatments and an ultimate cure. The organization is galvanizing thousands to join this fight, confronting ALS in an entirely new way, and driving innovative research forward, and at an accelerated pace. We are working to bring an exciting treatment, AT-1501, and many others, to market as fast as we can via our research partners at the ALS Therapy Development Institute. Augie’s Quest was founded m

ore than a decade ago by Augie Nieto, the successful fitness industry mogul behind Lifecycle and Life Fitness who was diagnosed with ALS in 2005 and whose life story was recently chronicled in the award-winning film, Augie. With Augie’s Quest, ALS doesn’t stand a fighting chance. Because ALS isn’t incurable, it’s only underfunded. Please join our quest at www.augiesquest.org.

About the Orangetheory® Fitness: Orangetheory® (www.orangetheoryfitness.com) makes it simple to get more life from your workout. One of the world’s fastest-growing franchise companies, Orangetheory has developed a unique approach to fitness that blends a unique trifecta of science, coaching, and technology that work together seamlessly to elevate participants’ heart rates to help burn more calories. Backed by the science of excess post-exercise oxygen consumption (EPOC), Orangetheory workouts incorporate endurance, strength, and power to generate the ‘Orange Effect’ – whereby participants keep burning calories for up to 36 hours after a 60-minute workout. Orangetheory franchisees have opened close to 1,200 studios in 50 U.S. states and 22 countries. The company was ranked #60 in Inc. magazine’s Fastest Growing Private Companies List and listed as #25 on the 2019 Entrepreneur Franchise 500 list. Visit www.otffranchise.com for global franchise opportunities. For more information, follow Orangetheory® Fitness on Instagram at @orangetheory or visit https://www.orangetheoryfitness.com/.