Dr. Goutman presents at Ann Arbor Active Against ALS Meeting.

March 12, 2019

Stephen Goutman, M.D., Director of the Multidisciplinary ALS Clinic at Michigan Medicine, gave a presentation at the Ann Arbor Active Against ALS Annual Meeting of the Board and Membership on Monday (March 11), at the A. Alfred Taubman Biomedical Science Research Building on the University of Michigan’s Medical Campus. Attendees also met researchers while touring the research laboratory of the ALS Center of Excellence at Michigan Medicine, which is under the direction of Eva Feldman, M.D., Ph.D.

Dr. Goutman presented the ALS Center of Excellence’s groundbreaking research to target natural killer cells in the effort to slow ALS progression. Following a video from Ben Murdock, Ph.D., who is the principle investigator of the study, Dr. Goutman informed the audience how how they are investigating existing drugs that target natural killer cells to be re-purposed for the treatment of ALS.

Ann Arbor Active Against ALS is a grassroots, nonprofit organization whose mission is to raise funds for research toward effective treatments and ultimately a cure for ALS (Lou Gehrig’s Disease), while raising awareness of the disease, encouraging physical activity, and building a compassionate community. A2A3 celebrated its 10-year anniversary in 2018. Its next fundraiser is the Twinkie Run on April 1. Click here for registration details.

February 27, 2019

ANN ARBOR, Mich. — A new study helps determine the role of pesticides and pollutants during the course of the progressive neurodegenerative disease that has no cure.

While exact causes of amyotrophic lateral sclerosis (ALS) remain unknown, new research shows pesticides and other environmental pollutants advance the progression of the neurodegenerative disease.

The latest study from the University of Michigan ALS Center of Excellence, recently published in the Journal of Neurology, Neurosurgery & Psychiatry (a BMJ journal), supports the group’s 2016 research that found increased levels of numerous pesticides in blood tests of people with ALS, says senior author Eva Feldman, M.D., Ph.D., director of U-M’s ALS Center of Excellence.

“Our latest publication shows that other toxins like polychlorinated biphenyls, known as PCBs, are also elevated in ALS patients and correlate with poor survival,” says Feldman, a Michigan Medicine neurologist. “Our research shows that environmental pollution is a public health risk that we believe must be addressed.”

ALS, also known as Lou Gehrig’s disease, is a rapidly progressive disease that causes people to lose their ability to move their limbs and body.

Read the full story on the Michigan Medicine Health Lab Website

December 18, 2018

ANN ARBOR, Mich. — The University of Michigan Program for Neurology Research & Discovery and the ALS Center of Excellence were saddened to learn about the passing of Scott Matzka following his fight against amyotrophic lateral sclerosis (ALS).

Matzka, who was diagnosed with ALS in 2014, was treated by the physicians, nurses, specialists and researchers from the U-M Multidisciplinary ALS Clinic throughout his disease progression. Always resolute in his battle, he did everything in his power to help others with ALS by being an advocate for public awareness and understanding of the disease.

Scott Matzka drops the puck prior to the inaugural ALS Awareness Game on October 8, 2016.

“Scott’s steadfast courage facing ALS will endure as an inspiration to all of the clinicians and researchers at the University of Michigan ALS Center of Excellence. Scott, his wife Catie, and his entire family have made an indelible impact on the community by raising awareness about ALS. Scott will be dearly missed,” said Eva L. Feldman, M.D., Ph.D., director of PNR&D and the ALS Center of Excellence.

Matzka played four seasons (1998-2001) for the University of Michigan hockey team, helping the Wolverines capture the national championship in 1998. He graduated in 2001 with a B.S. in computer science. Matzka went on to have a 12-year professional career in North America and Europe.

Following his ALS diagnosis, Matzka made it his mission to raise awareness for ALS with his “My Turn” foundation. In the fall of 2016, Matzka, the U-M hockey team, and the U-M ALS Center of Excellence teamed up to create the inaugural ALS Awareness Game. The first game was held October 8, 2016, with subsequent events were held February 23, 2018, and October 26, 2018. The games were an opportunity to draw attention to the critical need to find better treatments for those suffering from ALS.

“To me, it’s very important because you never know who is in the stands — a donor to help the cause, a student who might go into neurology to help cure ALS, or someone who can relate to that is inspired by the message,” said Matzka in the fall of 2018. “It is always hard to judge because awareness can’t really be measured. My Turn is an awareness campaign. We’ve raised money for several organizations and partnered with the Susan Mast ALS Foundation (in Grand Rapids, Michigan) to start the My Turn Project Fund to help others with ALS in western Michigan with construction projects. In my mind, we’ve been very successful educating and informing people about ALS and raised significant funds to help with my care.”

November 20, 2018

ANN ARBOR, Mich. — The University of Michigan Program for Neurology Research & Discovery (PNR&D) has received a $1.5 million grant from the Centers for Disease Control and Prevention (CDC), as announced by Eva Feldman, M.D., Ph.D., director of the PNR&D on Tuesday (November 20). The three-year grant supports research into environmental risk factors for amyotrophic lateral sclerosis (ALS), commonly referred to as Lou Gehrig’s Disease.

“This is a scientific extension of work that allows us to further understand the mechanistic role that pollutants or toxins have on the development and progression of ALS,” said Stephen Goutman, M.D., M.S., associate professor of neurology, and a co-investigator on the grant.

The grant supports Drs. Feldman and Goutman’s continuation of a 2016 CDC-funded study exploring links between environmental toxins, like persistent organic pollutants (POPs), and ALS risk. POPs are toxic classes of chemicals that have been used as pesticides, flame retardants, and coolants that survive in the environment despite banning. Their previous study,  Association of environmental toxins with amyotrophic lateral sclerosis (JAMA Neurology; July 1, 2016), suggested an association between higher concentrations of organochlorine pesticides and the risk of having ALS.

“Everything that you’re exposed to throughout your life has an effect on your genes,” said Feldman, the Russell N. DeJong Professor of Neurology. “While we cannot say that exposure to pesticides definitively causes ALS, we can point to the fact that in patients who have ALS, their long-term exposure to persistent organic pollutants is five times higher than those who don’t have ALS.”

While the exact cause of ALS is currently undefined, recent evidence suggests the importance of genetic susceptibility and environmental risk factors. Upcoming research will explore the lifetime of environmental exposures that contribute to an individual’s risk for ALS. Advanced analyses of metabolomics –  how small molecules in cells interact within a biological system – will offer insight into the role of residential and occupational exposures in disease onset.

Although studies to date have focused on the state of Michigan, PNR&D recognizes the importance of its data on all ALS community members. Accomplished by understanding specific environmental risk factors, measuring pollutants in biosamples of participants, and environmentally-induced genetic changes, results are expected to improve medical understanding of ALS. Data will enable future studies into gene-environment interactions, and ultimately assist in ALS prevention.

November 10, 2018

Ari Weinzweig gives the keynote address.

ANN ARBOR – Ann Arbor Active Against ALS, a non-profit organization, held its 10-Year Anniversary Gala on Saturday (Nov. 10) at the Travis Pointe Country Club. Ari Weinzweig, co-founder of Zingerman’s Delicatessen and a board member of the ALS Center of Excellence at Michigan Medicine, gave the keynote address, while Ann Arbor Active Against ALS Board President Michael Meister was the master of ceremony. Also in attendance from the ALS Center of Excellence were Research Director Eva Feldman, M.D., Ph.D., and Managing Director Mike Ritter, M.D.

Ann Arbor Active Against ALS is a grass-roots organization that was formed in the summer of 2008, after a group of friends and colleagues of Dr. Bob Schoeni learned of his ALS diagnosis. Dr. Schoeni and his wife, Dr. Gretchen Spreitzer, were an inspiring presence at the gala. They demonstrated the reason for the love and friendship of the volunteers and board of directors of this group, and their dedication to the cause of fighting ALS through funding research.

Dr. Feldman with Dr. Schoeni and Dr. Spreitzer.

Ann Arbor Active Against ALS raises money with numerous annual events and donates those funds to various national research programs, including our own University of Michigan Assistant Professor Sami Barmada, M.D., Ph.D. Since its founding in 2008, Ann Arbor Active Against ALS has raised more than $550,000 dollars to support ALS research. To read more about this outstanding organization, please visit its website, activeagainstALS.org.

Inspired by Scott Matzka, a former University of Michigan hockey player (1997-2001) who was diagnosed with amyotrophic lateral sclerosis (ALS) in 2014, the U-M hockey team held its third annual ALS Awareness Game on October 26 at Yost Ice Arena. Matzka, who helped U-M win the 1998 national championship, was joined at the game by his parents and son, Owen, who dropped the ceremonial puck before the game.

Showing their support for the Matzka family, in addition to all affected by ALS, were the clinical and research teams from Michigan Medicine’s ALS Center of Excellence. Dr. Eva Feldman, research director for the Center, and Dr. Stephen Goutman, clinical director for the Center, were on hand for the game and participated in the pregame ceremony.

“Increasing awareness about ALS is critical to the work we perform, not only in our clinic, taking care of these patients, but also in the laboratory, performing research to help combat this disease,” said Goutman, who is an associate professor of neurology. “The Michigan hockey program has been valuable in helping us spread the word, and we are indebted to Coach Pearson and Coach Berenson for their support.”

Feature Story: Matzka Says ‘MyTurn’ to Raise Awareness, Pay it Forward

Throughout the night, staff members from the Center worked a table on the concourse, answering questions from patrons. Several people stopped by to share a story about a loved one who had been affected by ALS.

On the airwaves, play-by-play announcer Al Randall spoke to Dr. Feldman during the first intermission about the challenges of ALS and how she and her staff are fighting the disease.

Dr. Feldman was also featured during a live, in-arena interview on the video board at second intermission.

“Scott Matzka was a healthy, strong player here in college for us, a great player,” said Mel Pearson, head coach of the U-M hockey team. “He won the ‘98 (national) championship. It was good for our team to have Scott in the locker room tonight. I told (the players) that winning is important, but the cause and what we’re trying to do to help ALS and help Scott is more important. To have the team rally around him and sing The Victors was really special.”

Earlier in the week, Randall interviewed Dr. Goutman during Coach Pearson’s weekly radio show.

More information about the history of the #IceALS game can be found at https://uofmhealth.org/iceals.

October 26, 2018

A determined player for the Michigan hockey team, Scott Matzka has the same attitude about spreading awareness about ALS and helping others with the same diagnosis.

Catie Matzka, Scott Matzka, Dr. Eva Feldman

“It’s my turn. I’m going to take my turn in doing everything I can to help people who are or will be affected by this terrible disease (ALS).” – Scott Matzka in The Players’ Tribune, October 2016

Matzka, a member of the University of Michigan’s 1998 national championship-winning hockey team, came to this realization in early 2016 after a conversation about confronting amyotrophic lateral sclerosis (ALS), with which he was diagnosed late in 2014.

Matzka was still in the early stages of the neurodegenerative disease in 2016 and he was inspired to take his turn giving a voice to others silenced by ALS, knowing the disease would eventually silence his own voice, too. He has spoken publicly about his experience all over the country and recently began a fund to help fellow persons with ALS.

Despite receiving the life-altering diagnosis in 2014, the Matzkas (Scott, his wife Catie, their daughter Reese and their son Owen) consider themselves fortunate. They’ve received endless support from their communities in Kalamazoo (where they reside), Port Huron (Scott’s hometown), Ann Arbor (U-M’s hockey program and Michigan Medicine’s ALS Center of Excellence, where Scott is a patient) and even Cardiff, Wales (where Scott played hockey professionally).

For example, on Oct. 26, 2018, the Michigan hockey team will host its third annual ALS awareness game at Yost Ice Arena in support of the family. Members of the ALS Center of Excellence at Michigan Medicine will be on hand to share information about the progress being made in research and treatment of the disease.

“Where would we be without the folks at the clinic?” Matzka said. “We’ve relied on the entire team for education, care, compassion and so much knowledge.”

Matzka is among the 200 patients that receive care from the U-M Multidisciplinary ALS Clinic, which includes physicians, nurses, specialists and researchers. They have worked with Matzka throughout his disease progression to help him maintain a quality of life. Nearly four years since his initial diagnosis, Matzka is now totally reliant on a motorized wheelchair for transportation, he can no longer speak and he requires assistance to breathe. Nevertheless, that hasn’t stopped the 40-year-old from doing everything he can to help others with ALS.

“Our family had been so blessed with support, emotional and financial, so I wanted to pass it on,” Matzka said, with the help of a computer that he controls with his eyes to communicate.

When friend Joe Irwin, diagnosed with ALS at 32, was in need of a bathroom remodel to accommodate new physical needs, Matzka said he was prompted to initiate a 40th birthday fundraiser to cover costs. He also reached out to Julie Snelling, executive director of the Susan Mast ALS Foundation in Grand Rapids, Michigan.

“When Scott asked me if we could help Joe, I replied ‘Scott, we meet a lot of people with these needs. Why not partner with us so we can help Joe and others like him with small construction projects?’” Snelling said.

The vision to help a friend, Matzka said, was transformed into “something bigger that could help more Joe Irwins that don’t have the incredible support we’ve had.”

Alongside the Susan Mast ALS Foundation, Matzka’s MyTurn Project Fund was then created, offering small grants to ALS patients seeking funds for accessibility improvements. Sharing similar visions and goals, Matzka said the foundation is an ideal partner for the project.

“Their focus is on the patient, where I believe I can probably have the most impact,” Matzka said.

Projects taken on by the MyTurn Project Fund are selected internally through a committee. Matzka and Snelling serve on it alongside Jennifer VanHorn Pfeiffelmann, the SMAF Board Chair and Ray Schnurstein, a Kalamazoo-resident who lost his brother at age 36 to ALS.

“Scott’s enthusiasm and determination in the collective fight against ALS has been and continues to be amazing,” said Eva Feldman, M.D., Ph.D., professor of neurology at Michigan Medicine and research director at its ALS Center of Excellence. “Since the day we met, Scott has been focused on action – how can he overcome this, how can he inform and raise awareness in the public? The fact that he’s now helping fund the care for fellow persons with ALS is outstanding and it fits precisely in line with his character.”

Upcoming projects include a shower insert for one patient and installation of a donated ramp to another.

“Scott is such an inspiration to others,” said Snelling, “and it’s been an honor to partner with
him.”

September 26, 2018

By Gabrielle de Coster

“I am the old man in the wheelchair world,” jokes Brian Coltman, ATP/SMS, CRTS, who is the mobility specialist for the University of Michigan Multidisciplinary ALS Clinic.

The “wheelchair world” is the seating and mobility industry, where Coltman said he has catered to patients with complex rehabilitation equipment needs for 38 years. For individuals with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, walkers and wheelchairs can help individuals conserve energy and retain mobility.

Dr. Goutman and Coltman took part in an ALS Association Facebook Live event on September 6, during which they detailed how power wheelchairs can be modified to suit the needs of each individual patient. Watch the replay.

“It makes a tremendous difference in people’s lives: keeping them healthy and extending their quality of life for the greatest period of time I can,” Coltman said.

Coltman said he first entered the field at 16-years-old working part-time at Thomas Surgical Supply. The high school job sparked an interest in the engineering and mechanics of assisted mobility, ultimately pushing him to remain in the industry and eventually yield to “the lure of being the leaders and the best” in joining UM in 2011.

“There are people in the industry who have a personal link,” he said. “Mine is a different story; I just found intrigue.”

Without an ingrained connection to initiate his industry involvement, Coltman said the work became personal through investing in relationships with individuals as people, not just patients.

“There will be certain points throughout their (ALS) diagnosis and the disease process when I’ll be at their homes problem solving different types of issues multiple times a month,” Coltman said. “So you can get to know them, their families, and caregivers.”

“The service that Brian provides to our patients is critical to our multidisciplinary approach,” said Stephen Goutman, M.D., M.S., the clinical director of the ALS Center of Excellence. “As physicians, patients come to us in the clinic where we provide care and guidance for living with ALS. Brian does an amazing job of going to the patients to really see how they live and provide mobility solutions that enable independence.”

Technological innovation has transformed the extent to which Coltman said he can work through those obstacles with patients.

“Back in the 1980’s, complex rehab was not really defined,” he said. “Power wheelchairs were just manual with motors and a few features, but nothing as helpful as now.”

Notably, he said the recent introduction of Bluetooth into mobility products allows patients to operate a computer mouse or operate electric door motors.

“The equipment now is far more user-friendly in the patient’s home environment; it has adjustability that has never been present before,” Coltman said. “I can take one chair and modularly change or adjust things on it for an extended period of time…maximize the performance for the person’s needs.”

While solutions continue to improve with technology, Coltman said the industry’s advancement is restrained by sparse funding sources.

“That (limited funding) is probably the biggest challenge and the most frustrating thing – the limitations that the funding places on the equipment,” said Coltman. “There’s a lot of technology out there inhibited because federal funding limits the access.”

Although understanding product technology and logistics are key facets of the patient experience, Coltman said the emotional component is also significant.

“There’s a psychological challenge to accepting assisted mobility,” said Coltman, who urges his patients to “redefine it in their heads as being a benefit” early on.

While responsible for making patient’s lives easier and better, the patients give Coltman a redefined perspective on life in return, he said.

“I learn to appreciate life,” Coltman said. “Doing this profession, you have a great appreciation for the simple things. It takes a lot to make me have a bad day.”

September 6, 2018

ANN ARBOR — Dennis Michael Ritter, M.D., has been hired as the managing director of the University of Michigan ALS Center of Excellence, it was announced today (Sept. 6) by Eva Feldman, M.D., Ph.D., research director for the ALS Center of Excellence and director of the Program for Neurology Research & Discovery.

Dr. Ritter

Additionally, Feldman announced that the ALS Center of Excellence has assembled a 13-member Board of Directors, comprised of business and community leaders.

As managing director, Ritter has oversight of the strategic direction of the Center and its newly-formed Board of Directors. He will provide leadership and professional expertise on matters related

to the management of the Center. Ritter will collaborate with the Board to foster public awareness of ALS, expand marketing efforts through written and visual materials, and assist with the fulfillment of fundraising goals.

“Given Dr. Ritter’s experience in a variety of hospital committees and clinic management at Mercy Medical Center in St. Louis, he will bring the ALS Center’s level of operation to new heights,” said Feldman, the Russell N. DeJong Professor of Neurology. “He also has a deep appreciation for patient care as a result of his outstanding career in medicine.”

A native of St. Clair Shores, Michigan, and two-time graduate from the University of Michigan, Ritter joins the ALS Center of Excellence following a distinguished career as an anesthesiologist in St. Louis. Dr. Ritter’s Complete Biography

“I could not be more proud to join the world-class ALS Center of Excellence team at Michigan Medicine,” said Ritter. “My longstanding experience as medical director of a large clinic in St. Louis will give me the tools to honor and assist our ALS patients and their caregivers, to achieve the goals of our Board, and to support the outstanding contributions to ALS research and clinical care by our physicians Dr. Eva Feldman, Dr. Stephen Goutman and Dr. Dustin Nowacek.”

The Board will support the Center’s mission of conducting basic science and clinical research, and providing exceptional clinical care to amyotrophic lateral sclerosis (ALS) patients and their caregivers. Board members are also charged with improving public knowledge about ALS and how it is treated.

“ALS is a disease that we must defeat and not be defeated by,” said Feldman. “It is a disease that requires more attention from the scientific community, as well as the general public. I am thrilled to welcome these public leaders to our Board, many of whom have been personally touched by ALS.”

The inaugural 2018 board of directors:

Doris Fortier Allen: a respiratory therapist at the Henry Ford Health System’s Harry J. Hoenselaar ALS Clinic with more than three decades in respiratory care and ventilatory support. Complete Biography

Dr. William T. Allen: a retired pulmonary and critical care physician with experience with hospital executive management at St. Joseph Mercy Hospitals in Michigan. He also was a faculty member at the University of Michigan. Complete Biography

Harold Burrell, Jr.: a partner, senior vice president and account executive of Lighthouse Insurance Group in Grand Rapids, Michigan. He has also served as a board member for ALS Association – Michigan Chapter. Complete Biography

Christina Clark: a former trustee of the ALS Association and member of the National Institutes of Health Director’s Council of Public Representatives from 2005-2009. Complete Biography

David Forbes: a partner of The Forbes Company, a nationally recognized developer, as well as owner and manager of luxury shopping destinations throughout Michigan and Florida. Complete Biography

Garlin Gilchrist, II: an experienced technology and community leader and founding executive director of the Center for Social Media Responsibility at the University of Michigan School of Information. Complete Biography

Lauren Hendel: a senior at the University of Michigan’s Ross School of Business, pursuing a bachelor of business administration. She is the founder of “A Lot Stronger Together,” the first student-run organization at U-M dedicated to supporting ALS research. Complete Biography

Willard Holt, III: an of counsel attorney at Plunkett Cooney, P.C., in Bloomfield Hills, Michigan and a member of Plunkett Cooney’s Business Advisory Group. Complete Biography

Hilary King: the current president of Temple Israel in West Bloomfield, Michigan, the largest reform Jewish congregation in North America and a past board member of the Anti-Defamation League. Complete Biography

Sheri Mark-Slaim: a registered nurse, attorney and writer from metro Detroit. She was previously president of the board of directors for Michigan Citizens for Stem Cell Research and Cures, and for North Star Reach Camp, a non-profit organization providing ill children with camp experiences in Pinckney, Michigan. Complete Biography

Scott Pranger: the principal manager for the Pranger Family Foundation in Spring Lake, Michigan. Previously he was the CEO and owner of EQI, LTD., and the vice president of Kurdziel Industries, Inc. Complete Biography

John Scarbrough: a retired global automotive supplier executive with many years of management experience in sales, engineering, and manufacturing. He has organized successful events to benefit the ALS Association. Complete Biography

Ari Weinzweig: the co-owner and founding partner of Ann Arbor-based Zingerman’s Delicatessen, a nationally-renowned restaurant that has grown into a community of more than 10 businesses. He is also active in the community, having served as a board member for a variety of organizations. Complete Biography

About the ALS Center of Excellence at Michigan Medicine: The ALS Center of Excellence at Michigan Medicine is comprised of an active basic science, translational, and clinical research program and the Multidisciplinary ALS Clinic. This structure engages collaboration between physicians, basic scientists, nurses, ancillary providers, and research coordinators all working towards better treatments, an understanding of why a person develops ALS, and ultimately a cure for ALS.

About ALS: Amyotrophic lateral sclerosis (ALS), which is commonly known as Lou Gehrig’s disease, is a progressive fatal neurodegenerative disease that leads to the death of nerve cells in the brain and spinal cord. This in turns causes progressive weakness of voluntary skeletal muscle often leading to death in 2 to 4 years. Current therapies only minimally slow disease and new therapeutic options are critically needed.