Live Like Lou Newsletter | In the Dugout | January 2022

ALS Awareness
Lou Gehrig

The First Pitch

Welcome to the first edition of the LiveLikeLou Foundation quarterly newsletter! In the Dugout will bring an inside look at the incredible work of our volunteers, researchers, and funds to help us leave ALS better than we found it, in honor of our namesake and baseball hall of famer Lou Gehrig, and the more than 20,000 people living with Amyotrophic Lateral Sclerosis (ALS) every day.

Whether you are a long-time supporter of our efforts for ALS, have supported a Phi Delta Theta member in their quest to become an Iron Phi; supported a campaign to send birthday wishes to a friend of LiveLikeLou; are registered as a LiveLikeLou ALS family or volunteer; or are one of our nearly one-hundred LiveLikeLou emerging ALS researchers, we hope you’ll find inspiration through our stories.

Advancing Scientific Research

To date, LiveLikeLou has raised and invested more than $5 million for ALS research. Thanks to the generosity and support of incredible donors and friends, Stephanie L. Moon, PhD, from the University of Michigan, was named our 2021 Career Development Award recipient. “We are always on the lookout for promising researchers in the early stage of their careers who may need additional support to help advance their research ideas. Dr. Moon certainly meets these criteria and more,” shared W.L. Gray, chairman of the LiveLikeLou Foundation board of trustees.

Dr. Moon’s project, titled “Valosin-containing protein: a master regulator of mRNA function and fate in ALS?,” was considered among a field of competitive proposals. The LiveLikeLou Scientific Research Committee, led by Gaylon Morris, LiveLikeLou trustee and vice chairman of the board, believes Dr. Moon’s project has the potential to uncover novel strategies for mitigating cellular stress, restoring protein expression and stopping the progression of neurodegeneration. “If we can figure out how VCP is playing a role in regulating the stress granule or how VCP helps those granules dissolve in the cell, it might give us more therapeutic targets to try and treat patients eventually,” shared Dr. Moon. 

Read more about Dr. Moon and LiveLikeLou’s scientific research efforts.

A Look Back at 2021

While our LiveLikeLou motto is ONWARD, signifying looking forward to life without ALS, it is important to look back and celebrate where we’ve come from and all we’ve accomplished in 2021:

  1. Four new Iron Horse Scholarship recipients were named, bringing us to twenty outstanding college students supported by LiveLikeLou whose families have been personally impacted by ALS.
  2. More than 275 families living with ALS have been served through our outdoor clean-up program matching these families with more than 300 volunteers from Phi Delta Theta Fraternity to provide hands-on support for projects around the house in honor of their Fraternity brother, Lou Gehrig.
  3. We continue to fund basic research at top-tier institutions to support talented emerging researchers, including Dr. Moon at the University of Michigan, and the 2019 Career Development Award winners, Veronique Belzil, PhD, from the Mayo Clinic in Jacksonville, Florida, and Manolis Kellis, PhD, of the Broad Institute of Massachusetts at MIT who were recently awarded a $9 million NIH grant to continue their collaboration in advancing ALS research. We are thrilled by this recognition for the exciting work being done by our LiveLikeLou researchers. 
  4. The Iron Phi program broke every single record in 2021—for number of new registrants, number finishing their Iron Phi journey by raising $1,000 and completing an athletic endeavor, and dollars raised in a year. Follow Iron Phi social media (@ironphi) in the coming weeks to watch Lou’s Olympics, a challenge to raise $444,444 through forty-four athletic competitions.

Swing for the Fences

In our second major effort to secure new institutional commitments to ALS research, LiveLikeLou has teamed up with Vanderbilt University Medical Center (VUMC) in Nashville, Tennessee, to establish new, pre-clinical, and innovative ALS science at this top-tier research institution. This will be Middle Tennessee’s largest investment in ALS discovery for this disease which needs more “at bats” to find treatments and cures.

Our phase one goal is to raise $3.5 million to recruit a translational scientist to serve as VUMC’s Director of ALS Research. Follow along on our campaign page as we’ve surpassed $2.4 million in this exciting effort!

Live Like Lou All-Star

Our All-Star for this issue is Anthony Gonzalez, a Phi Delta Theta alumnus from Seton Hall University. Anthony has served LiveLikeLou in several meaningful ways: he earned his Iron Phi designation in 2019 when he joined Phi Delt; he volunteers at Hope Loves Company camps for children who have or had a loved one battling ALS; he volunteered with an ALS family in his home state of New Jersey; and he serves on our Iron Horse Scholarship Selection Committee. As the only child of a single mother living with multiple sclerosis (MS), Anthony was familiar with neurodegenerative disease and Phi Delta Theta’s philanthropic cause of ALS was close to his heart.

“The fact that LiveLikeLou supports families emotionally and physically makes a huge difference,” he shared. Anthony is finishing coursework to earn his MBA from Seton Hall University and works for Barclays in New York. He plans to pursue a career in wealth management. “ALS isn’t something we can predict, and it changes lives in a second,” shared Anthony. LiveLikeLou is lucky to have Anthony volunteering to serve ALS families and make a difference for so many.

Phi Delta Theta: We "do it for Lou"

The Iron Phi program was established in 2010 by Phi Delta Theta Fraternity to strengthen the Fraternity’s impact on the fight against Lou Gehrig’s disease in honor of their brother, Lou Gehrig. Members of Phi Delt, friends of the Fraternity, and ALS advocates fortify the program by their fundraising and athletic endeavors. Successful Iron Phis raise $1,000 and complete their choice of athletic pursuit. To date, 1,225 individuals have become Iron Phis, raising more than $2.5 million through the program.

Recent Iron Phi #1216, Matthew Wood, from the University of Michigan, was inspired by his chapter brother, Sam Selley, who ran one hundred miles in one day (wow!). He was also motivated to support LiveLikeLou in memory of his grandmother, who died of ALS when he was in the sixth grade.  

“Going through a physically exhausting task was difficult, but made me so much closer to my friends, family, and brothers,” shared Matthew. Pictured above holding the basketball, Matthew set out to make 2,000 free throws to earn his Iron Phi status. It took 3,656 total shots to make it and he was supported by great friends and fraternity brothers. “ALS is an awful disease that isn’t fully understood and LiveLikeLou strives to help those diagnosed with it as well as attempt to find a cure,” said Matt. Click below to learn more about the Iron Phi program or sign up to become an Iron Phi yourself!

LLL Collectibles

Get in the game with LiveLikeLou gear! Enter to win a collectible LiveLikeLou “Luckiest” shirt honoring the Iron Horse, Lou Gehrig, and his historic July 4, 1939, speech that referred to his ALS diagnosis as a "bad break," and inspired every ALS family ever since by calling himself the “luckiest man on the face of the earth.”

Four lucky LiveLikeLou fans and followers will receive a shirt—one from each social media channel. To enter, tag a friend in the comments or retweet and be sure you like or follow @LiveLikeLou on Instagram, Facebook, and Twitter. Increase your chance to win by commenting on all three platforms!

One winner from each platform will be selected on February 3 at noon Eastern.

The Final Inning

Our LiveLikeLou programs are making a difference, and our 2022 plans include additional Iron Horse Scholarship awards, more ALS families served with our partners at Phi Delta Theta Fraternity and Hope Loves Company, and more grants to keep emerging ALS scientists focused on treatments or cures for this disease.

When we look back at 2021, we’re proud of the difference our volunteers, researchers, families, and donors are making.

We celebrate the legacy of our founders, Suzanne and the late Neil Alexander, and their determination in this fight against ALS. No doubt you know of the Alexanders’ story and their commitment to ALS families and research. As Suzanne transitions from a day-to-day role with LiveLikeLou to serve as a trustee with our board, we are ever thankful for her tireless efforts. We welcomed LiveLikeLou’s first executive director, Wendy Faust, to our team last year to take all that Suzanne and Neil built and, in partnership with each of you, to expand LiveLikeLou’s reach and impact.

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