Tag Archives: Glenn Close

Celebrating Science

Excerpt of a blog post by Dr. Tom Insel, Director of the National Institute of Mental Health.

(From NIMH blog)

(From NIMH blog)

The Research!America awards dinner is like a lot of DC galas, complete with members of Congress, celebrities, and speeches to honor those who have contributed to a cause.  For Research!America, the cause is biomedical research and this year, as in each of the past 25 years, there were honors bestowed on advocates for cancer and rare diseases.  Kathy Giusti, diagnosed with multiple myeloma in 1998, spoke passionately about the lack of research on this blood cancer and her singular fight to create a registry and clinical trials, leading to new treatments that have extended her own life and the lives of many others well beyond all predictions.  The parents of Sam Berns, an icon for the rare disease progeria, spoke of their son’s commitment to find a cure for this disorder in which children age rapidly and die early.  Sam died last month at age 17, but during his brief life, and partly through his efforts working with the world’s foremost genetics labs, the genetic cause was found and new treatments were developed that will almost certainly extend life for others with this rare mutation (see Sam’s inspirational Ted talk ).

For me, what made this event different from previous years was the recognition of advocates for people with mental illness.  The actress Glenn Close was recognized for co-founding BringChange2Mind, a campaign to reduce negative attitudes toward those with mental illness.  In her eloquent remarks accepting the award, Glenn introduced her sister, Jessie Close, and her nephew, Calen Pick, who each battle serious mental illness.  Jessie has struggled with bipolar disorder and Calen with schizophrenia.

When Glenn invited Jessie and Calen to make a few remarks, the evening really became historic.  Together, they described a journey undertaken with Deborah Levy and her colleagues at McLean Hospital and elsewhere over the past 3 years.   The research team found that Calen and Jessie shared a rare genomic copy number variant resulting in extra copies of the gene for glycine decarboxylase.  This gene encodes the enzyme that degrades glycine, a key modulator of the NMDA receptor, which has been implicated in psychosis.  Having extra copies of this gene, it seemed possible that Jessie and Calen would be deficient in glycine, with less activity of the NMDA receptor.

Read the full post here.

Advertisements

2014 Advocacy Awards Dinner

trofeoOn March 12, Research!America honored extraordinary leaders in medical and health research advocacy during the 2014 Annual Advocacy Awards at the Andrew W. Mellon Auditorium in Washington, DC.

We extend our congratulations to the honorees: Reps. Frank Wolf (R-VA) and Chaka Fattah (D-PA); actress Glenn Close and her family for their work to end the stigmas and misunderstandings surrounding mental illness; Leroy Hood, MD, PhD, president of the Institute for Systems Biology; Kathy Giusti, founder and CEO of the Multiple Myeloma Research Foundation (MMRF); Reed Tuckson, MD, managing director of Tuckson Health Connections; and The Progeria Research Foundation (PRF).

While much has been done to advance research, we have a long way to go.

13130132595_bc0c860475_o“Few out there seem to connect the dots to understand that federal funding is essential to develop the foundation of knowledge which is essential for American enterprise in developing the products and therapies that make our lives longer, healthier, and happier,” said Research!America Chair and former Member of Congress The Hon. John E. Porter in remarks at the Dinner. “There’s nothing more important to our future than investments in science, research, innovation and technology.”

And we agree! Contact your representatives and tell them to make research funding a higher priority.

Distinguished guests included current and former members of Congress and administration officials. Sen. Angus King (I-ME), Rep. David Price (D-NC), Rep. Nita Lowey (D-NY) and Rep. Scott Peters (D-CA), joined the celebration. Research!America board members,  The Hon. Mike Castle, The Hon. Kweisi Mfume and The Hon. Patrick Kennedy also attended the event along with former Congresswoman Mary Bono , former HHS Secretary The Hon. Dr. Louis Sullivan, NIH Director Dr. Francis Collins, NSF Acting Director Dr. Cora Marrett, and PCORI Executive Director Dr. Joe Selby.

Click here to see photos.

Research!America Honors Congressmen Frank Wolf and Chaka Fattah for Advancing Medical Innovation to Save Lives and Strengthen the Economy

Reps. Wolf and Fattah to Receive the Edwin C. Whitehead Award for Medical Research Advocacy at Research!America’s Advocacy Awards Dinner on March 12

ALEXANDRIA, Va.February 12, 2014-Reps. Frank Wolf (R-VA) and Chaka Fattah (D-PA) will receive the Edwin C. Whitehead Award for Medical Research Advocacy for their leadership and unwavering commitment to supporting policies that promote federal and private sector medical research and innovation. Reps. Wolf and Fattah have spearheaded efforts to create a legislative and regulatory climate conducive to medical innovation.

“Representatives Wolf and Fattah are exceptional champions for research,” said Research!America Chair John Edward Porter. “They have worked vigorously to increase funding for research, support policies that ignite public and private sector innovation, maintain our global competitiveness, and help patients and their families struggling with costly and debilitating diseases.”

Wolf is currently a senior member of the House Appropriations Committee, presides as chairman of the Commerce, Justice, Science Subcommittee, and is a member of the Transportation, Housing and Urban Development and State and Foreign Operations subcommittees. Throughout his distinguished tenure in Congress, Wolf has worked to advance the state of science and R&D, and he recognizes the role innovation plays in our nation’s economy, health and international competitiveness. Notably, he was a founder of the “Rising Above the Gathering Storm” Commission which sparked a national effort to bolster federal science, technology, engineering and mathematics (STEM) education and R&D programs. These efforts culminated in the enactment of the first America COMPETES Act in 2007 to increase public-private partnerships and provide assistance to innovators throughout the country. Wolf also supported the act’s reauthorization in 2010. He is an active member of several caucuses, including research and development, Parkinson’s, Alzheimer’s and multiple sclerosis. Continue reading →

A Weekly Advocacy Message from Mary Woolley: Pope Francis is the Man of the Year; do you know what the Word of the Year is?

Dear Research Advocate:

Here’s a holiday surprise! I am not referring to the budget deal, but to the fact that Merriam-Webster’s 2013 word of the year — determined via the greatest increase in online searches — is “science.” I find this to be refreshing news, providing evidence that interest in science is growing, which in turn is an indication of substantial room for researchers and research advocates to contribute to public understanding and support of science. We appear to have an opportunity ready for the taking to overcome the “invisibility” problem that contributes to holding decision makers back from assigning a higher priority to science.

And speaking of those decision makers, we have a budget deal! While modest at best, it is a starting point for bipartisanship in serving the public’s interest. We can build on this foundation. Please add your voice, as funding is being determined by appropriators. Click here to urge your Members of Congress to support robust funding for NIH, NSF, FDA, CDC and AHRQ. This week, we’ve released our annual Health R&D Investment report, which could provide new context for your messages. The report shows some gains in philanthropy, industry, and voluntary health association support for research but notes woefully inadequate federal funding, especially given what’s at stake for our health and our economy. Continue reading →

Research!America Honors Leaders in Medical and Health Research Advocacy

Glenn Close, Dr. Leroy Hood, Dr. Reed Tuckson, Kathy Giusti and the Progeria Research Foundation to Receive 2014 Research!America Advocacy Awards

ALEXANDRIA, Va.-October 22, 2013-Research!America’s 18th annual Advocacy Awards will honor extraordinary advocates of medical and health research who are distinguished in their commitment to advancing medicine and health. The event will take place on Wednesday, March 12, 2014, at the Andrew W. Mellon Auditorium in Washington, DC, as a part of Research!America’s 25th anniversary commemoration.

The 2014 Advocacy Award winners are actress Glenn Close and her family; Leroy Hood, MD, PhD, president, Institute for Systems Biology; Kathy Guisti, founder and CEO of the Multiple Myeloma Research Foundation (MMRF); Reed Tuckson, MD, managing director, Tuckson Health Connections; and The Progeria Research Foundation (PRF). The winner of the Edwin C. Whitehead Award for Medical Research Advocacy will be named by Research!America’s Board of Directors later this year.

“This year’s honorees have transformed the lives of many individuals across the country through their remarkable achievements and advocacy for medical and health research,” said Mary Woolley, president and CEO of Research!America. “Their unwavering dedication is helping to elevate research in the national conversation and inspire a new generation of advocates.” Continue reading →