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Apr 27

Packard Center Honors its 2016 Partners in Collaboration

The annual awards ceremony was held during the Center's 2016 Research Symposium.

Close to 100 Packard supporters, staff and volunteers as well as the scientists attending the Packard Center's annual symposium, gathered last month at the Hyatt Inner Harbor Hotel in downtown Baltimore to honor special friends and those that made a difference to the Packard Center over the last year.

Introduced by Center Director Jeff Rothstein, the Partners in Collaboration reception honored those who are outstanding in their unwavering commitment to ALS research. "Each of these individuals is a special partner in collaboration, supporting the vision and mission of the Packard Center through their hard work as volunteers, ambassadors and leaders," Rothstein said in his opening remarks. "On behalf of the researchers who are supported by your efforts, and the many patients and families who are impacted by ALS, tonight we say thank you."

This year's event featured Master of Ceremonies and a keynote speaker, Suzanne Malveaux.  Malveaux is an award-winning journalist with CNN who serves as the network’s national correspondent, covering politics, national news, international events, and culture. She has co-anchored CNN’s “Around the World," and co-anchored award-winning coverage of the revolution in Egypt as well as the Arab Spring. She has long served as White House correspondent covering presidents, reported from war-torn regions of the world like Rwanda, helped tell the stories of people living in the aftermath of Hurricane Katrina, and covered numerous other events of national and international importance.  

Many in the field of ALS also recognize Malveaux as a passionate advocate for patients, and an ambassador for research. Her mother has ALS, and since her mother's diagnosis, she has helped reach a broad audience by sharing her own family’s journey with ALS.


Grassroots Activism Centered Around ALS Research

Suzanne Ross (center) and Susan Miller (right), A2A3 board members, receive a 2016 Partners in Collaboration award from Jeff Rothstein.

Community organizations and grass-roots groups play an important role in raising awareness of ALS, and in raising funds for research. Often these groups form around a patient in the community, a neighbor, a friend. Ann Arbor Active Against ALS (A2A3) exemplifies what a committed group of volunteers can accomplish when they rally around a person with ALS and combine their talents and skills to make a difference.

A2A3 was formed in 2008 when Ann Arbor residents Bob Schoeni and Gretchen Speitzer announced that Schoeni had ALS. In response, their community rallied and a group of volunteers came together to help, and to see what they could do to help solve ALS. As the group grappled with what ALS would mean for their friend, they chose to include the word “Active” to be a part of their group’s name to emphasize the importance and joy of being physically active, as well as being active within their community.

Since their founding, A2A3 has raised hundreds of thousands of dollars for research. Some of the awareness and fundraising events that they have put on include box car derbies, runs and walks, family events, a beerfest and swimathons.

Over the past few years, A2A3 has funded several projects through the Packard Center. In addition, they have taken an active role in funding the work of a scientist in their own community: Dr. Sami Barmada at the University of Michigan.  


Family Bonds Lead to Action

Tom and Charlene Berardino (center) surrounded by their family at the 2016 awards ceremony.

William Gray Smith Sr., known simply as Gray to his friends and family, was an engineer and sportsman who lost his battle with ALS in 2001, at the young age of 35. He was survived by his wife Linda, an infant son, William Gray Smith, Jr., and other family.  Charlene and Tom Berardino are Linda’s parents. 

In 2007, the Packard Center started a new tradition: a spring fundraiser called the Fiesta 5K. This annual run/walk event occurs every year, and many families come together as teams to raise funds for research. One of the fundraising teams that has come back each year is a team called “Gray’s Gang”, captained by Gray Jr.  Since 2007, Gray's Gang has attended every Fiesta 5K raising tens of thousands of dollars.

Four years ago, Charlene and Tom Berardino increased their involvement and support for the Packard Center when they agreed to help underwrite the Center's annual symposium. Since the 2013 symposium, the Packard Center has recognized the Berardino family for their philanthropy in supporting its most important science meeting of the year. The Berardino Family was honored for their generous hearts, their love for family, and their commitment to the Packard Center. 


The Turn of the Dial Leads to an Interest in ALS Research

Dr. Melinda Boye accepts a 2016 Partners in Collaboration award, on behalf of The Boye Foundation, from Jeff Rothstein.

After a long career as a specialist on the New York Stock Exchange, William E. Boye Jr. established The Boye Foundation Inc. to pursue his philanthropic interests, and invited his family to join him in that endeavor. Unfortunately, William Boye, philanthropist and humanitarian, died of ALS in 2004, at the age of 68.

In early 2005, Rob Boye, son of the late William Boye heard an interview on the car radio with Dr. Jeffrey Rothstein, founder and director of the Packard Center.  Boye’s interest was piqued, he looked further into the organization, and then brought the Packard Center’s work to the attention of other family members at The Boye Foundation. Out of that bit of good fortune – turning on the radio interview – a partnership and relationship formed that has lasted for more than a decade.

The first grant from The Boye Foundation occurred in the summer of 2005.  Every year since, The Boye Foundation has made a grant to the Packard Center in support of its work and mission. 


Leadership and Innovation Prompt Answer ALS

Jay and Randy Fishman (pictured left and center) accept the Dr. John W. Griffin Innovator Award from Jeff Rothstein (right) at the Packard Center's annual awards ceremony.

The Dr. John W. Griffin Innovator Award is named for Jack Griffin, former chairman of Johns Hopkins' Department of Neurology, whose vision and innovation helped the Robert Packard Center for ALS Research become a reality.  Griffin passed away several years ago, but his spirit of innovation and pursuit of bold solutions continue to inspire everyone who knew him.  This spirit is what the Packard Center celebrates through this award, recognizing those who are willing to be bold in pursuit of a big, ambitious idea.  Jay and Randy Fishman, and the Fishman family, were the 2016 recipients of this prestigious award.

Outside of the world of ALS, Jay Fishman is widely recognized as a seasoned CEO with the smarts and skills needed to run one of the largest US corporations, the Travelers Insurance Companies. But within the ALS community, he is not just a strong advocate and proponent of the Packard Center's work, but has become a compassionate, kind, and articulate advocate for doing more to solve the disease and help patients today.

Diagnosed with ALS in 2014, Fishman was spurred into action to end this disease for future generations through his investment in Answer ALS, the largest and most comprehensive precision medicine program in ALS.  The Answer ALS research program was born of a meeting convened in summer 2013 by fellow ALS patient Steve Gleason, and its launch was initiated with a significant philanthropic commitment from the Fishman Family and other donors.  Answer ALS is simply the largest, most comprehensive attack on ALS – ever. As a champion of the cause and of the project, Jay Fishman’s vision and leadership is helping to attract other investors who share a passion for solving the disease.

To see Jay Fishman’s recent interview with Charlie Rose on Answer ALS, click here.

To read more about Answer ALS in the latest edition of Hopkins Magazine, click here.