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ALS Alert Newsletter

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May 23
2019

A great night with special partners whose commitment to research never waivers.

Annual Partners in Collaboration awards brings together Packard's most dedicated supporters.

In March, close to 200 Packard supporters, staff, volunteers, and scientists attending the Packard Center's annual symposium gathered at the Four Seasons Hotel in Baltimore to honor special friends and those that made significant contributions of time, treasure, and talent to the Packard Center’s mission.

This year’s Partners in Collaboration reception recognized those who embraced the Center’s core principals of collaboration, innovation and hope. “Collaboration and innovation not only happen amongst our scientists, but also among our philanthropists,” noted Packard Center Founder and Director Jeff Rothstein in his opening remarks.  “Every day, the people in this room bring hope to those with ALS. We are grateful for the part you play in pushing us forward.” 

Tom Hall, a Baltimore commentator and the host of Midday, the highly rated news and public policy program on the Baltimore NPR affiliate, served as the event’s Master of Ceremonies for the evening.  In November of 2010, Tom’s longtime friend, Dudley Clendinen, was diagnosed with ALS.  Clendinen was an award-winning author and journalist who lived in Baltimore.  The former reporter and editorial writer for The New York Times found out, at age 66, that he had ALS.  Over the course of a year, Tom conducted a series of conversations with Dudley in which he discussed how he became aware of the disease’s symptoms, how he coped with the diagnosis, and what he considered as the disease progressed.   Hall spoke about his series and reminded the audience of how living a good life doesn’t stop with an ALS diagnosis.

 

Matt White Foundation: Honoring a man that didn’t die from ALS, but rather chose to live with the disease for 19 years.

Matt White, a successful radio executive from Chicago, was 33 years old when he was diagnosed with ALS in January 2000 after noticing some weakness in his left hand.  Having learned of limited therapies and treatments for the disease, White set forth to make a difference for future ALS patients by starting the Matt White Cure ALS Foundation.  

White never let his disease slow him down.  After his diagnosis, he and his friends played 29 out of the country’s top 30 golf courses. Matt also designed and commissioned three types of adaptive fishing reels so he could continue his favorite pastime and still enjoyed floating in his pool or boating on the Florida seas despite his physical limitations.  

An alumnus of Butler University, Matt was also the school’s biggest basketball fan. In 2010, before the Bulldogs played in the NCAA Final Four game, the head coach invited White to attend the game and address the team with a pre-game motivational speech.  His love of Butler Basketball never wavered, and the University recently announced they would re-name their practice court The Matt White Court as a daily reminder of Matt’s grit, determination, and devotion to Butler Athletics. 

Since the foundation’s inception, the White family and friends have raised over half a million dollars for ALS research through a variety of fundraisers, including a golf tournament, walks and an annual Super Bowl gathering that always brought together White’s fraternity brothers. He learned about the Packard Center through his exploration of the ALS landscape. He chose the Center as a major recipient of the foundation’s funds because “it didn’t take a lot of research to realize that the Packard Center was making the biggest investments in ALS research and making the most advances towards a cure,” he says.  Over the past 15 years, the Matt White Cure ALS Foundation has gifted the Packard Center more than $165,000.

Matt White lost his battle with ALS just a few short weeks ago. White would have insisted that he didn’t die from ALS, but rather chose to live with the disease for 19 years. He is survived by his wife, Shartrina and their children. A courageous fighter, Matt White served as an inspiration to all who met him.  

 

The Gluck Family: Pursuing philanthropic commitments as a means of hope.

John Gluck, a 1962 graduate of the United States Naval Academy, was no stranger to valor, service and handling tough situations.  A career naval officer and the captain of nuclear submarines, Gluck spent his career in defense of his country. Together with his wife Julia and their three children, the Gluck family moved 16 times due to John’s commissions.

During his retirement, his pursuits became running, golf, volunteerism and a dedication to family.  In 2014, at the age of 76, Gluck, still active, was diagnosed with ALS at the Hopkins clinic.

The Ice Bucket Challenge was happening at the same time as Gluck’s diagnosis. After some research into the field of ALS science, the family decided to direct their gifts made during the challenge to the Packard Center, which sparked an ongoing commitment.

John Gluck lost his battle with ALS a year after his diagnosis.  Since that time, the Gluck family has made ALS research a top priority.  To celebrate his love of family, running, and their annual trips to the Outer Banks, the Gluck’s started the Jogger John Race.  

Every year, nearly 90 family members and friends vacation together and run a race in Gluck’s honor. Since the race’s inception, the family has raised more than $220,000 for the Packard Center. 

The family's commitment to the Packard Center extends beyond their generous philanthropic contributions. They attend many Center events, have made multiple visits to Hopkins and taken several lab tours. Gluck’s family has become a crucial part of our Packard Center community. 

The Gluck family continues to pursue research as a philanthropic commitment because they see it as a source of hope.  John Gluck’s legacy lives on through their family events and their philanthropic priorities.

 

Ed Rapp and Peter Warlick: From the ground to the air, these two forces are helping to change the world for ALS patients.  

In 2015, Ed Rapp and Peter Warlick travelled on parallel paths that ultimately intersected at Johns Hopkins and the Packard Center. In late 2015, Ed Rapp was a Group President of Caterpillar, Peter Warlick was a Vice President at American Airlines. Both men were rising to the top of their career paths, when, just months apart, they were diagnosed with ALS. They both met with Dr. Jeff Rothstein separately as patients, but it was clear that they wanted the same thing: to leverage their experience in big business to raise money and drive progress in the field of ALS research. Importantly, they also had the opportunity to befriend another former Hopkins patient, Jay Fishman, the CEO of Travelers.

Rapp and Warlick both leaned into their disease, building on the legacy of the late Jay Fishman and his patient-oriented vision. They have used their strong business acumen, leadership skills, and creativity to bring change to the landscape so that future ALS patients might have a more hopeful outlook. 

Rapp launched the Stay Strong vs ALS Foundation and Warlick rallied the aviation community and launched Aviators Against ALS. Together, these two very determined ALS patients have rallied their personal and professional networks and have raised just over $12M to fund the Packard Center’s Answer ALS program.

At this year’s Partners in Collaboration, Ed Rapp and Peter were awarded the Dr. John W. Griffin Innovator Award.  The award is named for Dr. Jack Griffin, the former chair of Neurology department at Johns Hopkins whose vision and innovation helped the Packard Center become a reality.  Dr. Griffin passed away several years ago, but his spirit of innovation and pursuit of solutions that were bold and “outside of the box” continue to inspire everyone who knew him.  And this spirit is what the Packard Center celebrated through this award, which recognizes those who are willing to be bold in pursuit of a big, ambitious idea, making these two forces the perfect recipients.