Award-winning Actress and Advocate Kathy Bates and Panelists Call for Greater Investments and Collaboration in Medical Research

Izzy Okparanta

“As you’re advocating for research dollars, make sure you make it personal. Insightful stories, emotional stories, those things work,” said Rep. David McKinley (R-WV-01) during Research!America’s 28th Annual Meeting of Members held at the Willard Intercontinental Hotel in Washington, D.C., on March 15.

McKinley, who lost his mother to Alzheimer’s, praised research programs like the National Institutes of Health (NIH) BRAIN initiative.

“We know that the NIH supports over 400 thousand jobs across America. Every year NIH writes grants for $32 billion. That’s significant,” McKinley said. “So we’ve actually seen a very positive impact from what the NIH has done. [But] it’s not just creating jobs; it’s breaking barriers.”

Following McKinley’s remarks, a panel discussed the progress and opportunities with lupus research. Allie Gutshall, a patient advocate and Lupus Foundation of America volunteer, described challenges in being diagnosed and treated for the disease. Gutshall recounted the weeks of fevers, swollen joints, migraines and pain she experienced during her senior year of college. Only after visiting eight doctors was she diagnosed with lupus.

“I soon found out that the only medicine that would end up working for me is not available around the world, so my dreams and hopes for a career as a diplomat were over,” said Gutshall, who had planned on joining the Peace Corps.

Sue Dillon, Ph.D., Global Therapeutic Head at Janssen R&D, said researchers could use the Cancer Moonshot’s approach of collaboration as a model for tackling other diseases, like lupus.

“We are very fortunate in Janssen in the way that we are set up because within our R&D group we have basic researchers who work side by side with clinical researchers,” Dillon said. “So we have the ability to understand and actually work on the mechanisms that underlie these diseases as well as then try to translate that science into new drugs or new drug possibilities.”

“Fifty percent of lupus patients go on disability within three years of their diagnosis,” said Dr. Christopher Collins, a Rheumatologist at MedStar Washington Hospital Center. He said greater investments in medical research could result in new drugs, allowing more patients to remain in the workforce.

Award-winning actress and Lymphatic Education & Research Network (LE&RN) spokesperson Kathy Bates closed out the meeting by sharing the story of her personal struggle with lymphedema and voicing the need to spread awareness about the disease and raise funds for research and treatment.

“Ten million Americans suffer from lymphedema. That’s more than MS, muscular dystrophy, ALS, Parkinson’s and AIDS combined. But nobody knows about lymphedema,” Bates said. Some of those with lymphedema “suffer daily, often with terrible physical and emotional pain” while waiting for the correct diagnosis.

Bates brought to the stage eight-year-old LE&RN youth ambassador Emma Detlefsen – whom she called her “personal hero” – and together they encouraged lawmakers to support funding for research. Bates also urged Congress to pass a bill that would help cover the cost of lymphedema compression garments under Medicare.

Click here to view photos from our 2017 Annual Meeting. 

Izzy Okparanta is Research!America's Senior Communications Specialist.

Comments

Emma Detlefsen IS a hero! At the age of eight, Emma has decided that she is going to change the world for the better for lymphedema patients, and her friendship with Kathy Bates is going to go a very long way to making that happen. Huge kudos to both of them for a big heroes of this fight! And huge kudos to Emma's family, brother Jacob, dad Nick, and mom Tiffany, one of my heroes !

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America’s economic destiny lies in innovation, technology, science and research.
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