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Final 2019 ALS Unfiltered Events

White Coat Affair Gala - November 9, 2019 in Boston

Join us for our annual White Coat Affair gala, taking place on Saturday, November 9 at the Renaissance Boston Waterfront Hotel! Enjoy cocktails, dinner, and live music as we honor our close friends and family members with ALS. Experience an unforgettable evening as we come together as a community to recognize the progress of research toward ending this disease. Register now to attend.

Submit Your Leadership Award Nominations

Named for the people who have inspired our work, supported our mission, and fueled our spirit, the ALS TDI Leadership Awards honor those who lead us in the battle against ALS. Awards are presented each year at the Leadership Summit. To nominate someone for one of our four awards, you can email your award nominations to summit@als.net by October 2, 2019, at 11:59 p.m.

A Different Sort of Hall-of-Fame: Charcot, Gehrig, and ALS

Listen to the Lastest Endpoints Podcast Episodes

• What to know about CuATSM clinical trials
• Samantha Van Saun: Building an ALS Community
• Mary Ann Singersen: A.L.S. Family Charitable Foundation

TCS New York City Marathon for ALS TDI

This year, the ALS Therapy Development Institute (ALS TDI) has 15 people running at the TCS New York City Marathon. Each and every one of them was inspired by someone in their life to run for ALS research at ALS TDI. You can read more about why they run and donate to their fundraising efforts here.

FDA Issues Guidance Document

Join us in Boston in November!

We are excited for three full days of learning about and celebrating the progress in ALS research: an open house at the lab on November 7 to kick off the weekend; the Leadership Summit, a full-day conference providing an in-depth look at the most advanced ALS research, on November 8; and the White Coat Affair on November 9. Learn more and register here.

Combined Federal Campaign

Listen to the Lastest Endpoints Podcast Episodes

• What Do We Know About C9ORF72?
• Tamara Hillard: Anticipating Needs as an ALS Caregiver
• Jeff Roosa: Uniting First Responders to End ALS

Giving Tuesday is December 3rd!

Upcoming Leadership Summit and White Coat Affair

This weekend we are hosting our 15th ever Leadership Summit and 9th Annual White Coat Affair. We can't wait to celebrate the progress in ALS research with our ALS TDI family. If you can't be there this weekend, be sure to follow along with us on our Facebook page.

Shop Amazon Smile

While shopping this holiday season, be sure to use Amazon Smile and choose the ALS Therapy Development Institute as your charity of choice! With every purchase made through Amazon Smile, Amazon donates 0.5% of the total value of your purchase to ALS TDI at no cost to you. Now that’s something to smile about! Get started with Amazon Smile here.

The Clinical Trial Phases Explained

The Latest Endpoints Podcasts

• Collin Hadley: Choosing to use Mechanical Ventilation for ALS
• What to know about AMX0035

Back in 2014, seemingly a lifetime ago, I watched with mild annoyance as my social media feed became increasingly dominated by friends and acquaintances dumping ice water over their heads to raise awareness of some rare disease called ALS.

Little did I know.

Three years later, I was living a normal life as a happily married father of two, with a thriving business that kept me active. When I began experiencing abdominal cramps and weakness in my right thumb, nothing could have prepared me for the diagnosis that was to come—“You have ALS. It is incurable.” I was in a state of shock. How could ANY disease be untreatable in the year 2017?!?

My life and my family’s lives have changed forever with my diagnosis. A?happy ever after?with my wife now dims from view.?I?may not be there for?important milestones?with my kids: vacations, swim meets, graduations, marriages, grandchildren.

It’s hard to think about the things that I may not be able to do in the future, but I’m lucky that my “best brother,” Scott, helps me focus on the things I can do right now.

Scott and I share a passion for cars, particularly, fast ones. Thanks to Scott, we’ve spent the last year living our dream or racing cars together, while I still can. For us, racing has become about finding a cure for ALS. Our passion has turned into a mission to help raise funds and awareness for research at the ALS Therapy Development Institute (ALS TDI).

And even if my time is limited, I know the work being done at ALS TDI has the potential to save someone else’s sibling, parent, spouse, or child. Perhaps even my own. Perhaps even yours.

I am writing today to ask you to join Scott and me as we work to help things move faster at ALS TDI. Last year, donor support helped ?ALS TDI to expand their drug discovery and development program to find more potential treatments for people with ALS. ?ALS TDI is getting closer to finding effective treatments, but they need community members like you and me to fund their work to end ALS. Will you join our race by making a gift today to support ALS TDI’s critical work?

Together, we will end ALS. Thank you so much.

Top 5 Things to Look for in ALS Research in 2020 Webinar

Join our President and CEO, Steve Perrin Ph.D., and our CSO, Fernando Vieira M.D., for a summary of research from 2019 and a look at the top five things to look at in ALS research in 2020. You can register for the webinar here.

Racing to End ALS

Recap from the 2019 Leadership Summit

On Friday, November 8, 2019, ALS TDI hosted our 15th Leadership Summit, a full-day conference featuring keynote presentations that provide an in-depth look at the most advanced ALS research. You can read more about the talks given that day and watch the videos from the presentations here.

Giving Tuesday Was A Hit!

The Latest Endpoints Podcasts

• Roy and Terence Taylor: Watch Your Back MND
• Andrea Sheehey: Ales for ALS

• We now have over 560 people with ALS enrolled in our Precision Medicine Program (PMP).
• ALS TDI’s PMP launched a new initiative to validate and discover blood-based biomarkers for ALS.
• ALS TDI scientists began working with zebrafish models as versatile tools for ALS target validation and drug discovery.
• We are greatly expanding the scale of our drug discovery efforts after acquiring a compound library of 30,000 small molecules, which can be screened rapidly in these ALS-related cells.
• Through Anelixis Therapeutics, AT-1501—which was discovered at ALS TDI—finished a Phase 1 Clinical Trial.

Will You Help Fund Research at ALS TDI?

A few weeks ago I asked you to join my brother Scott and me in helping to make research move faster at ALS TDI. ALS TDI is getting closer to finding effective treatments, but they need your help.

Corntoss Challenge

Ales for ALS™

Ales for ALS™ is a national partnership between the best hop growers and breweries to raise awareness of ALS and crucial funding into discovering and developing effective treatments and cures. Breweries around the world are given a unique hop blend to create a special beer just for the event, donating $1 to ALS TDI for each pint of their brew sold. Since 2013, the Ales for ALS^™ program has raised over $2.5 million for ALS research with over 200 breweries participating around the world.

Ragnar for Research

Hosted by ALS TDI, Ragnar for Research is part of the Ragnar Trail Race series, the largest overnight relay series in the nation. Through Ragnar for Research, teams of eight run a combined 120 miles through some of the most scenic locations in the country. They cheer, celebrate, wear crazy costumes, and conquer challenges together in this epic three-day, two-night adventure to fund ALS research.

Driving for Life

Want to organize a golf tournament to help end ALS? Driving for Life is one of the longest-running fundraising campaigns to support ALS research through the game of golf. Whether you have a personal connection to ALS, or you just want to support a great cause, by championing a Driving for Life tournament, you can enjoy the game you love while raising funds for groundbreaking ALS research.

Tri-State Trek

ALS Unfiltered

ALS TDI Featured in "The Age of A.I."

Happy New Year! Our 2019 Milestones.

Resolve to Fund ALS Research in 2020

Looking for a New Year's Resolution? Consider participating in one of our signature programs! ALS TDI hosts events throughout the year all across the country. From biking 270-miles to educational programs to grabbing a beer with friends, we have programs suited for everyone. You can learn more about our signature programs here. 

We Want to Hear From You

Last Chance to Apply to Run the United NYC Half Marathon

By applying to run the United Airlines NYC Half with the ALS TDI team, you will be raising much-needed funds and awareness for ALS research. We hope to see you in NYC in March!

Apply now here: https://fundraise.als.net/nyc-half-marathon-application

The Latest Endpoints Podcasts

• What to know about CMAP.

Top 5 Things to Look for in 2020 Webinar Recap

Corporate Team Program at Tri-State Trek 2020

Have you ever wanted to try riding at the Tri-State Trek? Do you or someone you know a company that would want to sponsor you can your friends to ride with us? Through our Corporate Team Program, first-time riders can enjoy the full-service weekend with no requirement to fundraise. Learn more about the Corporate Team Program and how to get your company involved below. 

Augie’s Quest Translational Research Center

ALS TDI is pleased to announce the formal naming of its Augie’s Quest Translational Research Center at the ALS Therapy Development Institute. In recognition of the tremendous contributions of Augie & Lynne Nieto, Augie’s Quest Translational Research Center honors the work, innovation and steadfast support of the entire Augie’s Quest organization and its many generous and committed donors. Learn about the Translational Research Center here.

Driving for Life is Back!

New Episodes of The Endpoints Podcast

• The Lloyd Brothers: Racing for ALS

Last week, I told you about an anonymous donor who was so moved by my friend Daniel''s story, that they pledged a $50,000 match for the end of year donations made by December 18, 2020. 

Friday, December 18, 2020, is the last day for you to help us reach our $50,000 match, and we are 80% of the way to meeting our match goal! Donate now to double your impact!

Sincerely, 

Carol Hamilton
Senior Director of Development