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ALS Alert Newsletter

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May 1
2018

Packard Center returns to its roots with Partners in Collaboration reception

Annual Partners in Collaboration honors those who help the Packard Center thrive.

Last month, close to 150 Packard supporters, staff, volunteers, and scientists attending the Packard Center's annual symposium gathered at the Baltimore Hyatt Regency 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 helped the Packard Center build its roots and those who continue to help the Center grow. "Each of these groups is a special partner in collaboration, with their roots deep in supporting the vision and mission of the Packard Center through their hard work, volunteerism, ambassadorship and leadership,” said Packard Medical Director Jeff Rothstein in his opening remarks. “Each of these groups has brought their gifts and talents to this partnership, and we are deeply grateful to them for their investment in our continued success.”

Tom Hall, Baltimore commentator and the host of Midday, the highly rated news and public policy program on the Baltimore NPR affiliate,  served as the 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.

A Ride for Life

Jeff Rothstein (left) awards Chris Pendergast with a 2018 Partners in Collaboration award.

Chris Pendergast didn’t set out to be an activist.  An ALS diagnosis in 1993 set this feisty Long Island 4th grade science teacher on new path of self-discovery and empowerment.  Coming to grips with his disease wasn’t easy, and five years into his diagnosis, Chris decided to travel by wheelchair from Yankee Stadium in New York City to Washington, DC to raise patient-centered awareness for ALS.  Over the course of that 16-day journey, Ride for Life was born.  Along the way, Chris stopped by Johns Hopkins and met with a young ALS clinician and researcher he had learned about and had come to admire. Thus began a twenty-year friendship with Dr. Jeff Rothstein.  Chris raised more than $30,000 on that first ride, and since that time Ride for Life has raised over $3.5 million for ALS research and patient services, with over $400,000 being directed toward the Packard Center.

Chris, along with his wife and partner Christine, has worked tirelessly for the benefit of ALS patients, their families and caregivers, and to advocate for research dollars. This past spring, Chris and Christine visited the Packard Center on their way to Washington, DC to celebrate the 20th Anniversary of the Ride for Life. Although most of us would have slowed down after 20 years, the same can’t be said for the Pendergasts. Their dedication, passion, and inspiring ways continue to motivate us all.

 

Helping to Establish Packard’s roots

Chris Angell and Bobye List of the Emily Davie and Joseph S. Kornfeld Foundation.

Collaboration is the cornerstone of the Packard Center’s mission, and the Kornfeld Foundation’s collaboration with Jeff Rothstein sparked a new direction in ALS research almost twenty years ago. This means their roots in the establishment of the Packard Center run very deep. 

In 1979, the Emily Davie and Joseph S. Kornfeld Foundation was established with goal of supporting medical research, palliative care, bioethics and education.  ALS research was not one of the Foundation's original directives, but over the past 19 years, it has become one of the group's foremost areas of interest. 

Kornfeld Foundation president Chris Angell was all too familiar with ALS, as his wife Jean was diagnosed with the disease in 1998.  After extensive research into the ALS landscape, Angell ultimately came to know the work of Dr. Jeff Rothstein, who was then in the process of establishing a new collaborative model that would help streamline a path to new discoveries into ALS.   Impressed with Rothstein’s vision, the Kornfeld Foundation made a start-up pledge of $4M to help establish the Center for ALS Research at Johns Hopkins (later to become known as the Robert Packard Center). Over the past 19 years, their commitment and assistance has never wavered. 

Chris and his wife Jean Angell continue to serve as members of the Packard Center Board of Governors.  The Foundation’s Executive Director, Bobye List, brings her administrative talents, expertise, and her insurmountable energy to the Packard Center. Today, the Kornfeld Foundation continues to provide an annual grant to help make the annual Symposium possible. 

 

A Spark of An Idea Sets the Stage for Research Innovation

In 1999, a young, insightful San Francisco-based investment banker learned he had ALS.  Bob Packard was 41 and a husband, father to three young children, and at the height of his career when he received this devastating news.   Packard was an early investor in emerging technologies, taking risks and chances on far-reaching ideas before the rest of the world could come to understand them. This forward-thinking ingenuity would ultimately lead to a collaboration that would change the way ALS research would be conducted.

Bob Packard made the trip east and met with a young Hopkins doctor, Jeff Rothstein, who confirmed his ALS diagnosis.  While at Hopkins, Bob Packard learned that there were no therapies for the disease and at that time, no clinical trials on the horizon to help him.  But what he also learned from this young doctor was that there was a vision to change how research could be conducted.  Bob Packard returned to San Francisco with a renewed sense of hope and embarked on a mission to help Jeff Rothstein launch his ideas into reality.

Rallying his family, friends and colleagues, Bob Packard created the Robert Packard Foundation, raising more than $4M in start-up funds.  Simultaneously, the Kornfeld Foundation had just provided start-up funds to start the Center for ALS Research at Johns Hopkins and the two entities joined forces.

Bob Packard lost his battle with ALS in August of 2000 and through a generous commitment made by the Robert Packard Foundation, the Center was named in his honor in 2002.

Today, the Packard Family continues to represent the lasting legacy of Bob through their continued philanthropy and support.  In 2017, Bob’s daughter, Lauren Packard, joined the Center’s Board of Governors to help continue her father’s determination and his focus on curing ALS.

 

Working toward a Cure: Hook, Line and Sinker

Members of the Mid-Magothy Invitational accept a Partners in Collaboration in honor of their late friend Eddie McGowan.

Three years ago, Severna Park resident Roger Kouhi gathered his friends and neighbors and started a small community fishing contest called the Mid-Magothy 50/50. Part fishing contest, part neighborhood party, the event welcomed 12 boats the first year and was a huge success.  Around the same time, their good friend and neighbor Eddie McGowan was diagnosed with ALS.  McGowan, a lifelong Annapolis-area resident, was a legend on the Annapolis music scene as member of the Irish rock band The Rovers.  In addition, McGowan co-founded the Annapolis Irish Festival and helped establish the annual Santa Speedo Run.  His zest for life, creative spirit and love of fishing helped to define this husband and father.   

As the news of McGowan’s diagnosis set in, the group turned the contest into a way to honor their friend by raising money for ALS research. The second year of the neighborhood contest saw 34 boats and the group donated the prize money to the Packard Center.  Since 2014, the Mid-Magothy Invitational has raised more than $64,000 for ALS Research. This year’s event, scheduled for June of 2018, will be bittersweet, as their friend and inspiration, Eddie McGowan, lost his battle with ALS just a few weeks ago. 

 

On and off the Field, Steve Gleason is Scoring Touchdowns for ALS Patients

Football great and ALS activist Steve Gleason (left), pictured with Packard Center director Jeff Rothstein.

Steve Gleason was an unlikely advocate for science, known more for his brawn on the football field and his zest for life. Gleason was a safety for the New Orleans Saints when ALS struck him in 2011. 

In the city of New Orleans, Gleason is a legend. His blocked punt in the first play of the first home game after Hurricane Katrina became a symbol of the City’s comeback and is even memorialized in a statue outside the Superdome.  Not only did Steve help bring hope back to the City of New Orleans, he is also now helping to bring hope to those with ALS.

Steve formed Team Gleason to open up a conversation about ALS to ultimately find solutions and an end to the disease.  Since that time, he has helped to provide patients with life-altering technology so they can help manage their disease, created the Gleason House where patients can live more independently, and helped raise public awareness by giving ALS patients extraordinary life adventures.

In 2013, Team Gleason asked Packard Center founder Jeff Rothstein and Lucie Bruijn, Science Director for the ALS Association to help bring together scientists, clinicians, patients, caretakers, advocates, and associations to work to establish a roadmap for fast-tracking new treatments and a cure for ALS—but one that specifically included the patient in that equation.  What was distilled from these discussions was Answer ALS, the largest, most comprehensive attack on the disease—ever.

At this year’s Partners in Collaboration, Team Gleason was awarded the Dr. John W. Griffin Innovator Award.  The award, 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, recognizing those who are willing to be bold in pursuit of a big, ambitious idea, making Steve Gleason and his team the perfect recipient.