We Want You for the New Voices Scientist Survey

We're in the final weeks of the New Voices Scientist Survey and have already received responses from scientists across the country. The question is: are you one of them?

By distributing this survey, we're trying to find out more about scientists' views toward communicating science to the public and their perspectives on the policy process. We want to know what you think, and what experience you have with each. The results will provide vital and timely insight and help guide the New Voices for Research Initiative.

The more people that complete the survey, the more representative our results will be of the national scientific community. Anyone who has completed at least some master's study (or higher) and intends to complete their degree in any of the scientific or medical fields is eligible to participate.

Thanks to everyone who has completed our survey. If you haven't yet, please take 10 minutes now to do so. Your individual responses will not be associated with you personally, and any identifying information will remain confidential.

If you have any questions or concerns, please feel free to contact me at ipeterson (at) researchamerica.org. To read the original post and find out more about this survey, click here. Thank you!!


*Image based on Creative Commons content from theunicyclegirl

The Life Sciences in Kansas

Welcome back to Installment 7 in our entrepreneurship series. Today, as promised, a discussion of free money, Democrats and Republicans who actually agree with each other, and flying cows. Where does this all happen??

Kansas—The Sunflower States. Or, as some would like you to believe, the bioscience state.

Kansas isn’t traditionally thought of as a home to outstanding bioscience. However, the state does have an established publicly-funded research infrastructure with the University of Kansas and Kansas State University. In 2004, Kansas put an end to the naysayers who’d say the state wasn’t interested in the life sciences. The republican-controlled state house and senate passed the Kansas Economic Growth Act of 2004, called KEGA for short by state insiders. KEGA passed with an overwhelming majority of both Republicans and Democrats. KEGA was then signed into law by then-governor Kathleen Sebelius, a Democrat (and now the Secretary of Health and Human Services).

Democrats and Republicans who overwhelmingly agree with each other—CHECK!

So what, exactly, did KEGA do? In short, a lot! KEGA was an overwhelming piece of legislation designed to spur economic development through entrepreneurship. Here are some of the notable programs created by KEGA:

• The Kansas Bioscience Authority (KBA), an independent entity of the state charged with guiding future life sciences development, was created.
• Financing resources for start-ups are provided.
• Tax incentives for investors and start-ups encourage private investment.
• Matching funds to promote research are provided by the state to encourage researchers to apply for federal grants and to recruit researchers from other states.

Free money—CHECK!

In 2007, Kansas launched a state-led effort to attract the National Bio and Agro Defense Facility (NBAF)—a Department of Homeland Security (DHS) research facility—to Kansas. The NBAF conducts research into biological threats against livestock and the food supply, namely nasty things like Foot and Mouth disease.

DHS was looking to relocate the facility from an island off the coast of New York, and Kansas wanted that facility. Why? DHS estimates that the NBAF would create 450 to 510 total jobs!

To show their determination to win the research facility, Kansas donated nearly 60 acres of land to DHS to build the NBAF. The state also authorized $150 million of revenue bonds to build infrastructure around the proposed NBAF site. Kansas' efforts paid off. This year, DHS announced that the NBAF would be built in Kansas—a major boost to the state’s life sciences industry.

So what about flying cows?? (Ok, I’ll admit I’m taking a little extra creative liberty here.) Recently, the Government Accountability Office (GAO) raised concerns about building a research facility for biological hazards in the middle of tornado alley. The GAO is concerned that the possibility of severe weather spreading biological hazards (like Foot and Mouth disease) was overlooked when studying Kansas as a potential site for the NBAF. The possibility of “flying sick cows” has caused lawmakers to look twice at the NBAF site in Kansas. (See the Kansas delegation's response here.) It’s yet to be seen if the NBAF—and the 500 jobs in brings—will actually be located in Kansas.

So, flying cows—(half) CHECK!

This is Part 7 of 8 in our Entrepreneurship series.
Part 1 - Science and Entrepreneurship: An Introduction
Part 2 - It's All About the Ideas (and Money)
Part 3 - Financing a New Business in the Life Sciences
Part 4 - Leading Life Science States
Part 5 - Life Sciences in North Carolina
Part 6 - Life Sciences in Minnesota
Part 7 - Life Sciences in Kansas
Part 8 - Life Science Industry Overall

Columbus Day

New Voices is off today in celebration of Columbus Day. We'll be out scouring the horizon for signs of new frontiers in advocacy and communication to share with you when we get back. Have a great holiday everyone.

Rett Syndrome Awareness Month

Although I personally am not a parent, I'm getting pretty good insight as to what it must be like as I watch my friends start their families. It seems to be like a rollercoaster ride… exciting, surprising, stimulating, and at times, down-right scary.

Ask an expectant mother is she wants a boy or girl, and likely, you’ll get back, “I just want a healthy baby.” From conception to birth and though adulthood, parents want the best for their kids. So imagine having a healthy baby girl, watching her grow; her first smile, her first steps, her first words; and finding out that your healthy baby girl has a disorder that’s going to undo all of this. This is what it’s like for a parent of a child with Rett Syndrome.

Rett Syndrome is a childhood neurodevelopment disorder, which means that it’s a disorder that affects the normal development of the nervous system in children. This specific disorder affects the development of all motor movements (including walking, breathing, blinking; basically any movement that your body does will be affected by this disease). It’s caused by a genetic mutation, and it mostly affects girls. Up until the 1950s, there was no name for it. Since then, over 4,000 children have been diagnosed.

Children with the disorder develop normally early on, but begin to show symptoms between 6 and 18 months of age. It usually starts with subtle changes, like the inability to hold a gaze or a delay in their ability to walk or crawl. However, as Rett Syndrome progresses, the child will have more trouble with programmed motor movements, such as speaking, walking, chewing, and even breathing.

Every case is different, and some are more severely affected than others. These kids generally survive into adulthood (approximately 70% live to between 35 and 40). They go to school, go on vacations, and spend time with family and friends. But they need help with daily activities, and they cannot communicate vocally, but can by other means.

In reading the letters of families with affected children, you know that these women are loved, and love. They may never have their own family and need physical assistance throughout their lives, but they, and their families, live life.

Because we now know the gene causing this disorder, doctors are able to screen for this mutation. The symptoms of this condition can be managed, but there is no cure.

If you’d like more information, are interested in reading more about the families affected by this disorder, or have a child with this disorder and are seeking support, visit the International Rett Syndrome Foundation website. For more information and to learn about studies being conducted, please visit the National Institute of Neurological and Stroke Disorders. You can also view many stories of these children and there families on YouTube.

Just one more reason why research for health is so important.

Understanding Depression

Depression is one of those words that’s floated around a lot in general conversation. I’ve even been guilty of using it out of context (i.e. "I’m so depressed, it’s raining out so now I can’t take my dog to the park"). I can’t help but wonder if this is at least part of the reason why clinical depression is not taken seriously in our society. And yes, I did just call it a condition, because it is!

I think people forget that this is a very real medical condition that is caused by physiological changes in the body. That is, it’s caused by a change in the release of chemicals in the brain (called neurotransmitters) that regulate the nervous system. This results in changes in brain activity, and that translates to altered behaviors and emotional states. This chemical imbalance is generally caused by a change in either the internal or external environment, or maybe both. This is why there are so many different types of depression.

For example, postpartum depression occurs in women who have just recently given birth. This is thought to be due to a combination of hormonal changes occurring in the body, as well as the new (and often overwhelming) responsibilities of being a mom. The three most commonly diagnosed depressions are manic depression, major depression, and dysthmia, but there are others as well.

Depression can affect all ages (from childhood to seniors), genders, and races. What’s amazing to me is that even though this is an entirely manageable condition (there are many known medications that can ease the symptoms associated with depression), many people do not get screened. This is a debilitating disorder, and untreated it can and does lead to suicide. If you think that you or a loved one is suffering from depression, there are a host of websites that can get you more information, or talk to your physician and ask to be screened. This disorder is real, it’s dangerous, and it’s treatable.

We need more research into and more awareness of the medical causes and treatments for depression. Think about it…

• An estimated 6 million men are thought to have depression in the U.S., but many go undiagnosed because they can’t or don’t want to recognize the symptoms.
• Women aged 18-45 comprise the largest proportion of people experiencing depression
• Depression affects more than 6.5 million of the 35 million seniors (65+) in the U.S.
• 1 of 4 adults will experience a depressive episode by the time they are 24 years old
• Depression, if left untreated can lead to suicide. An assessment from the American Health College Association found that 9.4% of students (of 23, 863 participants) reported seriously considering attempted suicide at least once in a 12 month period.

For more information on depression, its symptoms, and how to get help, refer to the following websites or talk to your doctor:

National Institute for Mental Health

Mentalhealthscreening.org

American Psychological Association

National Alliance on Mental Illness

Who Works in a Congressional Office?

Knowing your audience is an important part of successful interactions, and this is just as true on Capitol Hill as anywhere else. When, if ever, you visit a Congressional office, you should have some idea of who you are speaking with and what they do. Today’s post provides an overview of the different people who work in these offices, also known as personal staff.

Members of both the House and the Senate employ personal staff. In the Senate, the size of the population of the Member’s state determines the staff budget and thus the number of staff; the average office has 34. Members of the House can only hire 14 full time and 4 part time staff; the average size of a House office is 14.*

Although you won’t see all of them during a visit, the following staff members usually work in Washington offices:

Chief of Staff: the Member's top political adviser, runs the office
Legislative Director: plans legislative initiatives, supervises legislative staff
Legislative Assistants (LA): focus on specific issues, monitor related bills and committee meetings; draft floor statements; draft replies to constituents
Legislative Correspondent (LC): handles communication with constituents
Press Secretary/Communications Director: liaison to the press, drafts press releases
Executive/Personal Assistant to the Member
Office Manager
Computer Systems/Mail Manager

Other staffers also work in the Member’s home state office(s), usually including:

State/District Director: runs office(s) in the home state and acts as political liaison to the community
Projects/Grants Coordinator: seeks federal funding for District/State projects and institutions
Caseworker/Constituent Services: provides constituents with information and assistance with federal agencies

Depending on your reason for visiting, the people you are most likely to meet with in DC are legislative assistants or correspondents. The size of the office will determine how specialized the person you are meeting with is. In larger offices, it is possible that the staffer you meet will be fairly specialized and have a great deal of knowledge about your issue. In smaller offices, you are more likely to meet staffers who are tracking a significant number of issues.

No matter who you meet, though, remember the basic rules for making your case, be respectful, and always thank them for their time.


Photo credit: kimberlyfaye
*http://www.c-span.org/questions/weekly35.asp

Are the Nobel Prizes Overdue for a Makeover?

Yesterday marked the announcement of the 2009 winners of the Nobel Prize for Physiology/ Medicine. Recipients this year were Elizabeth H. Blackburn of the University of California, San Francisco, Carol W. Greider of Johns Hopkins University of School of Medicine, and Jack W. Szostak of Harvard Medical School. The award was in recognition of the discovery of telomeres and telomerase; two important pieces of our greater genetic puzzle.

Discovering how our genetic materials stays intact as cells divide is important to understanding one of the most basic processes in human biology, cell division. Cells are the structural and functional unit of an organism and they divide to allow for growth and to keep the organism (that means you!) healthy. As cells divide, telomeres protect the chromosomes (which house your genes). Telomeres are built by the enzyme telomerase. So, you can see why these scientists have been recognized by the Nobel Foundation.

The Nobel Prize is recognized internationally as arguably the most prestigious award bestowed to recognize achievements in the fields of physics, physiology or medicine, literature, peace, and economics. They were established in 1901, and have undergone very little change since their inception. The most recent update to the awards was the addition of the award for Economics in the 1950s. Now, in a world where you can’t seem to listen to the news without hearing about climate change, renewable energy, and health care, a group of scientists are suggesting that the Nobels need a makeover.

The New Scientist reported last week that a group of scientists are calling for the addition of two awards to recognize achievement in environmental research and public health. They also want an expansion of the Nobel Prize of Physiology/Medicine to include all of the Life Sciences.

This article got me thinking… They do have a point. Certainly there is ground breaking research occurring in fields that may not exactly match this category, but contribute vital information to the public. For example, would Darwin’s Theory of Evolution have been considered under the current categories? Certainly this is a basic and accepted tenet of science, but I suspect it would not fall in to the criteria for the Nobel for Physiology/Medicine.

So, I’m curious to know what others in the public think. Groups countering this argument suggest that while there are limitations to these categories, there might be more harm done than good if it's changes. Basically, it’s worked so far, so why change? They also point out that there are other awards for disciplines not recognized by the Nobel.

Proponents argue the latter point by saying that the Nobel is the most prestigious, and should not limit itself to particular disciplines in the life science. And I say, isn’t science all about adapting and changing with progress? So I'm interested in what you think. Should the Nobel Prize be revamped?

The Life Sciences in Minnesota

Last week, I gave you the 50,000 foot overview of the life sciences industry in North Carolina. As you will recall, 35 states have implemented policies to facilitate the growth of their life science industry. Today, its Minnesota’s turn.

Minnesota—The North Star State

In contrast to the state-guided efforts in North Carolina that I discussed last week, Minnesota has traditionally relied on its research institutions and medical device industry to guide development in the life sciences.

In 2005, the state legislature created the BioBusiness Alliance of Minnesota (BBAM) to guide life sciences development. BBAM is comparable to the North Carolina Biotechnology Center in scope and mission—to guide the development of the life sciences industry within the state. BBAM has established a resource network to help new company establish, and provides business consulting services. BBAM is assessing workforce and educational gaps, but does not have training programs in place to the extent that NCBiotech does. BBAM also lacks many of the financing options that NCBiotech provides.

One of the most striking differences between the life sciences industry of Minnesota and North Carolina is the amount of state support given to each state’s life science centers. BBAM receives less than 5% of the amount of funding that NCBiotech received from the state of North Carolina. NCBiotech is staffed by 61 experts; BBAM has 8 employees. The differences in manpower and resources have an effect on the scope, research and effectiveness of each center. Imagine trying to do the work of 61 expects with only 8 employees!

There was some exciting news for Minnesota last year when biotechnology titan G. Steven Burrill announced a goal of attracting $1 billion of private venture capital to the state for new life science companies. As you will recall, VC is one those all-important sources of financing that new business need.

My 50,000 foot recommendation for Minnesota—it’s time to make a serious investment in the life sciences by providing access to financing for entrepreneurs. Minnesota has great research infrastructure in place, but the financing options and incentives just aren’t there for new businesses. And to the researchers at those great research institutions—quit playing Minnesota nice in your labs! Let’s see some cut-throat research with the goal of commercialization!

Next week, I’ll provide an overview of our final state—Kansas. Stop back then for a discussion of free money, Democrats and Republicans who actually agree with each other, and flying cows! (No, I’m not kidding on any of the above!)


This is Part 6 of 8 in our Entrepreneurship series.
Part 1 - Science and Entrepreneurship: An Introduction
Part 2 - It's All About the Ideas (and Money)
Part 3 - Financing a New Business in the Life Sciences
Part 4 - Leading Life Science States
Part 5 - Life Sciences in North Carolina
Part 6 - Life Sciences in Minnesota
Part 7 - Life Sciences in Kansas
Part 8 - Life Science Industry Overall

New Voices' Capitol Hill Round-Up

In the past couple of weeks, we here at New Voices have been pretty busy getting out and around to various events in DC. Below, check out some of the great events we've been participating in and a list of upcoming events you might find interesting.

Past events
Wednesday, September 23rd
Biomedical Research Caucus Briefing
Dr. Shelley Carson from Harvard University discussed the issue "Does Aging Bring Wisdom?"

Thursday, September 24th
Rock Stars of Science Briefing
Scientists, members of Congress, and cultural figures came together to discuss diseases including Alzheimer's and cancer and the need for continued support of research. Watch a video of Dr. Francis Collins, Dr. Rudy Tenzi, and Joe Perry of Aerosmith performing together here.

Congressional Black Caucus Legislative Conference, "Making the Dream of Guaranteed Healthcare a Reality" panel discussion

In cooperation with the office of Rep. John Conyer, host of the panel discussion, Research!America was given the opportunity to promote its constituent education initiative Your Congress-Your Health.

Additionally, Research!America president, Mary Woolley, was one of five panelists participating in the forum.

Wednesday, September 30th
Biomedical Research Caucus Briefing
Dr. Stephen T. Warren from Emory University School of Medicine presented his talk "Fragile X Syndrome: Can Drugs be Used to Reverse Autism."

Thursday, October 1st
The Quest for Cures: Horizons for Cancer Research
We heard from scientists and patients who are seeking greater insights into cancer about how collaboration, investment and personalized medicine lead to better health.

Upcoming Events
Thursday, October 8
Global Health IS America's Health: Tuberculosis

Tuesday, October 13
2009 Garfield Economic Impact Award Luncheon
The Garfield Award, being presented this year to Darius Lakdawalla, PhD, recognizes research that demonstrates how health and medical research impact the economy.

The Quest for Cures: Horizons in Cancer Research

Today Research!America hosted “The Quest for Cures: Horizons in Cancer Research” on Capitol Hill. Presenters included Mary Woolley, President and CEO of Research!America; Stacie Propst, PhD, VP of science policy and outreach at Research!America; Dr. Mace Rothenberg, MD, Senior VP of clinical development and medical affairs and Pfizer Oncology; and Kate Thaxton, pancreatic cancer survivor. Representatives Michael Burgess, MD (TX-26th) and Edward Markey (MA-7th) also addressed the attendees.

This event had a two-fold mission: 1. To educate the attendees about cancer and the current research in the field; and 2. To show the need for more funding for research in this field to find cures for the great variety of cancers that affect our population.

The event began with Representatives Burgess and Markey addressing the attendees and lending their support for cancer research, emphasizing the importance of both prevention and treatment. Mary Woolley and Stacie Propst gave an overview of the importance of research into finding cures for this disease. Dr. Propst emphasized the extensive effects of cancer are with both a Powerpoint slide attesting to that fact, but, perhaps more powerfully, asking for a show of hands around the room of people who had been affected personally by cancer. The message was clear; this is a disease that is extremely prevalent in our population. Dr. Propst then highlighted the important role that research has played in increasing cancer survival rates over the last 30 years (from 55% to 66%), but emphasized that there is still a long way to go. Increasing funding for research is the only way that we can achieve this goal.

Dr. Mace Rothenberg then added his perspective as a researcher. He began by highlighting the fact that cancer has a largely genetic component, and that personalized medicine will play an important role in discovering the treatments for these very diverse cancers. He emphasized the importance of the partnership between academic institutions and private companies, saying that it’s often the research done at the academic level that allows industry to pursue specific treatments. He then highlighted the importance of the clinical trials that allow these advances to be both proven and then made available to the general public, highlighting the story of a woman diagnosed with lung cancer, and given a chance at a cure through a clinical trial. It was her enrollment in this trial that saved her life.

Kate Thaxton, a three-year survivor of pancreatic cancer and the final panelist, shared the powerful story of her battle with cancer. When she was 34, active and seemingly healthy, she began experiencing pain in her abdomen. Though she was initially treated for indigestion, further tests revealed that her body was “riddled” with tumors; she had late stage pancreatic cancer. Such a diagnosis is, sadly, not uncommon for a pancreatic cancer patient: only a few risk factors for pancreatic cancer are known, there are no early detection methods, most symptoms could be attributed to a variety of conditions, and 52% of patients are diagnosed when they have advanced disease that has already spread.* What is both uncommon and incredible is that Kate has survived. The longer-term survival rate for pancreatic cancer is the lowest of all the major cancers: only 24% survive one year and only 5% of patients survive more than five years. Kate does not know exactly why she has been able to stay alive and moreover continue her active life, but credits it to a variety of different off-label cancer protocols and luck. Through her participation, Kate helped give a human face to the day, and her story clearly emphasized the need for further research.

At the end of the event, Mary Woolley moderated a Q&A, and her final question to panelists left attendees with a strong take-away message. She asked the panelists: “If you could speak to the President for fifteen seconds, what would you ask him?”
These were their responses:
--Dr. Propst said that she would emphasize the need to support further research.
--Dr. Rothenberg said that he would tell the president to come back next year to find out what has been accomplished (with regard to cancer research and treatment) and what challenges remain.
--Kate echoed Dr. Propst’s request and said that she would emphasize the importance of research.

Well put.