Wednesday, July 23, 2014

A Groundbreaking Commitment to Psychiatric Research

A Groundbreaking Study and the Largest-ever Commitment to Psychiatric Research

Youtube

By Ken Duckworth, M.D., NAMI Medical Director

Today I was fortunate to be on a panel to discuss the findings of a major piece of work published in Nature and the unprecedented $650 million dollar gift from Ted Stanley to the Broad Institute to further this type of work. The event was a celebration of Mr. Stanley’s game changing vision and commitment to research in the underlying biology of psychiatric illnesses, and a call to action for more progress in this crucial area. I represented the perspective of NAMI and our urgent need for better treatment options.

The event was held at the Broad Institute in the heart of the MIT campus, which has become a hotbed of bioscience innovation and research. The Broad institute itself is bright and open, and conveys a sense of possibility. This was once a scruffy neighborhood and it was remarkable to experience the new energy flowing here. The Kendall Square area, at the center of the MIT campus, has been transformed by the influx of scientists and industry. This gift will continue to attract the best minds to continue the remarkable research momentum and help fill a critical need when funding from the U.S. government is uncertain.

The study compared the genomes of more than 37,000 people living with schizophrenia and compared their genes to people who do not live with the condition. The riddle that is the gene component to schizophrenia has vexed many but now the evidence base is rapidly expanding. Sorting out an enormous number of puzzle pieces and making patterns of them is the work of complex genetic assessment. The study identified 108 key genes (83 of which have not been previously linked to schizophrenia) in this analysis and the Broad Institute will do a deep dive of each of them. This study is only the first step; one of the lead scientists told me more papers are in press and will be coming out later this year.

I have invited the lead scientists to our national convention in San Francisco in 2015 to share their insights to our community. Steve Hyman, the director of the Stanley Institute for Psychiatric Research at the Broad Institute of MIT and Harvard and former director of the NIMH has emphasized an open source philosophy. This means that all the data sets will be shared with researchers from across the world. This approach will clearly advance the field faster. This is an advance in scientific culture as well as neuroscience.

In my work as a psychiatrist at the Prevention and Recovery from Early Psychosis (PREP) clinic I say “I don’t know” a great deal. My young patients and their families ask me, what caused these voices? How does the medication work exactly? Will reducing my medication after 3 years of no symptoms be a big risk to my recovery? For these and many other questions I offer my best understanding from the imperfect literature, and our theoretical understandings. For many of these questions we simply don’t have the building blocks we need. We simply need to learn more so better shared decisions can be made. My patients and families deserve better understanding to deal with symptoms that have so powerfully impacted their lives.

Patience and humility are of course key themes in this kind of basic science research. The researchers are humbled to say that they cannot promise a quick return, yet carry clarity of purpose: cancer was once a scary and seemingly unknowable illness that has very few treatments. Today because of better knowledge of the underlying science, there are new options being developed on a regular basis in the field of oncology.  This gift and this culture change and this line of inquiry will hopefully yield similar results in our field.

Tuesday, July 22, 2014

Helping Young People Share Their Experiences and Find Support

By Joni Agronin, NAMI Communications Coordinator

Last summer, when I was an intern for NAMI, I was fortunate enough to be able to attend a launch event on Capitol Hill for Ok2Talk.org. I listened to Congressmen and women talked about how important it was for the government to set aside party differences and address mental health issues in the coming year. I was there for the big reveal from the National Association of Broadcasters (NAB) of this brand new campaign that was aimed at teaching young people that it’s “ok2talk” about mental illness.

I remember furiously taking notes and thinking to myself-- this is awesome! But how come it took so long for something like this to be created?

The answer is because for so long, many people, especially parents were scared to have the tough conversations with their kids about mental illness and vice versa. Young people are supposed to be carefree and innocent. No parent wants to imagine their child struggling, feeling alone or depressed, or misunderstood.

But, the reality is that mental illness affects young people at an alarming rate. We know that 50 percent of all lifetime cases of mental illness begin by age 14 and 75 percent begin by age 24. We also know that early intervention and strong foundations of support are some of the best ways to lead individuals on the road to recovery. 

Ok2Talk was built as a forum for young people to talk about their mental health experiences and find support and solidarity among their peers. I remember at the launch event, after all of the politics and PR, a young woman named Ellie Hoptman from NAMI Northern Virginia walked up to the podium to make a speech. She talked about how hard it was for her to live with a mental illness and keep it hidden from her classmates until one day she finally spoke up and realized that she was not alone. Ellie said, “There were people out there like me, and it made all the difference in the world.”

Now, one year later, NAMI has been privileged with the opportunity to adopt this network of young people from NAB and continue to provide support to thousands of passionate, brave and articulate teens across the nation. The stories I read on Ok2Talk each day echo the things that Ellie said in her speech last summer.

"I don’t know why I decided to write this. I guess some part of me wants to reach out to someone that won’t judge"

“I know what it’s like to feel like no one cares. But, I got better and so will you.”

“I know it’s hard and you don’t see the point, but I promise, even though it sounds really cheesy, that all of it happens for a reason and you will come out so much stronger in the end.”

It’s amazing what a difference just being able to talk to someone can make. Support from a friend, parent, teacher or even a stranger can go such a long way.

Encouraging young people to speak up and ask for help saves lives.

If you want to share your story or just read the words of others please visit www.ok2talk.org.

Friday, July 18, 2014

National Minority Mental Health Awareness Month: The Time for Action Is Now

By Corrine Ruth, NAMI Policy Intern

In honor of National Minority Mental Health Awareness Month, individuals and organizations across the nation are speaking out about the need for increased attention to mental health and improved access to mental health services for diverse populations.

To Cecelia Williams, stigma is one of the most prevalent challenges she has faced in her role as NAMI Sharing Hope coordinator in southeast Texas. But she also knows that transforming the conversation requires a relentless commitment to “educate people about mental illness, treatment options and research.”

An Engaged Community is an Active Community

Building trust within diverse communities takes time and consistency, especially when it comes to increasing awareness about mental health. Education programs that acknowledge and reflect the diversity and values of a community appear to be effective forms of engagement.

That is why National Minority Mental Health Awareness Month is so important to Cecelia and many other leaders across the country. Gloria Walker, president of NAMI Urban Greater Cincinnati Network on Mental Illness has thought strategically about her Affiliate’s July community event because “it gets the word out to an underserved community of people with very little, if any, knowledge of mental illness and recovery and gets them talking about it.”

The Celebration is in Full Swing!

Community events, campaigns and initiatives help us bring widespread attention to the mental health needs of minority groups.  These events create a setting for individuals to discuss important issues and allow advocates to connect with local leaders and communities. Through music, art, food, speeches, presentations, book discussions and film screenings, we are sharing the message that mental illness impacts people of all backgrounds and that people of all communities need access to mental health care and treatment.

Cecelia partnered with local community organizations to sponsor a suicide prevention presentation on July 12 as part of a wellness series. Gloria planned a reception featuring a keynote speaker from the American Psychiatric Association Office of Minority and National Affairs, a breakfast panel and two breakout sessions to capture tangible plans of action on minority mental health advancement.

Developing the relationships formed through the process of putting on this event is a must,” said Gloria. Beyond the personal satisfaction, NMMHAM has allowed me and my Affiliate to increase our network of contacts.”

Here is a list of some of the great things other NAMI Affiliates are doing:
  •        NAMI of Greater Toledo is sharing information about mental health and NAMI programs at a local minority health fair – and they’re doing it in style by bringing the NAMI Ohio mobile mental health bus!
  •        NAMI Prince George’s County held a mental health forum at a local church that focused on mental illness and stigma in the African American community. Participants shared what it was like to experience mental illness and audience members were allowed to engage in productive discussion about the specific mental health challenges faced by minorities.
  • NAMI Cumberland Harnett and Lee Counties is hosting a discussion of the book, The Secret She Kept by Rhonda Tate Billingsley, which focuses on mental illness in African American family.
  •   NAMI Wisconsin has held a series of culturally diverse music events in local parks and public spaces. They’ve worked to share information about mental illness and distribute NAMI materials at each concert.
  •    NAMI Santa Clara County has planned a “Food Fun Dance Education Day” that features Asian and Latino dance and food presentations along with wellness instruction.


The list of NAMI NMMHAM events goes on. And there’s still room for you to get involved! We encourage you to reach out to your local NAMI to see if there are any events in your area that you can participate in.

Here are some ideas of what you can do to keep the momentum on minority mental health going:

·         Like us on Facebook
·         Tweet using #MinorityMentalHealth
·         Share your story

Thursday, July 17, 2014

Promise and Patience in Understanding the Brain

By Ken Duckworth, M.D., NAMI Medical Director

There is a growing recognition in both the U.S. and Europe that a fundamental understanding of how the brain works is an urgent priority.  This flows from the awareness that the public health burden of brain-based conditions is staggering, and that for the first time we have some truly promising tools to help us get there. This substantial scientific effort will take patience but it also holds much promise.

The approaches on either side of the Atlantic are quite different. Given how much of what we know from drug discovery is rooted in good observation and chance, it is hard to predict what approach will yield the best results.

In the U.S. President Obama announced the BRAIN Initiative, which will “seek to map the circuits of the brain, measure the fluctuating patterns of electrical and chemical activity flowing within those circuits, and understand how their interplay creates our unique cognitive and behavioral capabilities.”

In Europe the European Union’s Human Brain Project (HBP) seeks to model the human brain on supercomputers. Recently some scientists have formally criticized the EU approach, calling it premature. Regardless, both investments represent nearly simultaneous multiyear commitments to better understandings of the neuroscience we need so badly to advance care.

Understanding the brain better does not mean mental conditions are only about genes or biology. An important principle is that environment impacts genes and gene expression—this concept is called epigenetics. Environment could mean protective elements like love and holding or risks like viruses at certain stages of neurodevelopment or traumatic experiences. It’s important to think both and not either-or when thinking of psychiatric conditions and the brain and environment.

We have a greet deal to learn but have already come upon some important findings. We do know that the brain is more plastic—able to adapt and be shaped—than was first thought. Imaging the brain (fMRI, PET scans) have helped us move forward in basic functional understanding, but isn’t a clinically useful tool at this time.

On the basic science side, two major recent breakthroughs stand out. First, the ability to generate stem cells from adult skin holds great promise. In 2014, scientists have looked at nerve cell responses taken from stem cells from individuals with bipolar disorder to learn how they function differently than from people without bipolar disorder. Another recent basic science breakthrough is optogenetics, which is the ability to impact specific cells through light and modified proteins. These are not yet clinically useful, but will teach us a great deal about the human brain. That knowledge will lead to better interventions.

One of the challenges I have as NAMI’s Medical Director is cautioning patience even as I am so hopeful that novel scientific avenues will bear fruit. It is hard to know when and what new treatments and interventions can come from a more thorough understanding of the human brain. People want and deserve better treatments now, as there is a great deal of unmet need in the areas of brain disorders. Both a commitment to science to learn more and getting people what we already know works are essential.

 

 

Monday, July 14, 2014

Employment and Mental Illness: Investing in Programs that Work

By Dania Douglas, NAMI State Advocacy Manager

“My mental condition was horribly debilitating for many years. I had no reason to get out of bed in the morning….I had no direction and no purpose. Now, when my feet hit the floor, I get to go to work every day and practice my passion.” – Stephanie Joseph, CPA, Office Administrator NAMI, Montgomery County.

Ask 100 different people what work means to them, and you are likely to get 100 different responses. It can simply mean a source of income; it can provide a purpose; it can create order in life; it can be an opportunity for creativity and building something new; it can be a chance to help others.

People with mental illness work successfully in a range of professions: at artists, scientists, famers, engineers, lawyers, construction, workers, chefs. Look anywhere and you will find people with mental illness leading and innovating.

Yet, the reality in America is that many people with mental illness are either unemployed or underemployed. Bouts of illness, difficulty concentrating, trouble communicating with co-workers, medical appointments and absences from work can make getting and keeping a job difficult. Stigma and discrimination can also be great barriers to overcome.

NAMI just released a report, Road to Recovery: Employment and Mental Illness, which explores the current state of mental illness and employment in the United States. It examines the reasons for low unemployment rates among people with mental health conditions, and describes the most effective supported employment programs that have been developed to date. The report is also a call to action for policymakers and advocates. It includes policy recommendations and model legislation that leaders could use to make supported employment programs available to the people who need them.

Almost 80 percent of the nearly 7 million individuals served by the public mental health system in this country are unemployed. About 60 to 70 percent of these same people want to work and would work if they had appropriate support. The current employment support systems we have in place are simply not effective for most people with mental health conditions. It is time for a change.

The good news is that there are employment programs that have been studied, tested, and shown to help people with mental illness choose, get and keep a job.

Individual Placement and Support (IPS) Supported Employment is a system that focuses on rapid placement in competitive employment and in jobs that match an individual’s talents and interests. IPS has a strong evidence-base shown to significantly improve the opportunities for people with mental illness to find and keep employment.

Clubhouses are community centers open to anyone with a mental illness. Clubhouses offer a variety of employment services including transitional employment and independent employment programs. Both have been proven through research to help improve opportunities to find and keep employment.

Assertive Community Treatment (ACT) is a team-based system that provides intensive support services to people with serious mental illness in the community whenever and wherever they are needed 24/7. Every ACT team should include a vocational specialist. ACT has a proven track record of helping people find and keep employment.

When we invest in programs that work, we invest in real lives, in real people, in real success and real recovery.

Tuesday, July 1, 2014

Every Voice Matters, Especially in July

By Corrine Ruth, NAMI Policy Intern

Sergio Aguilar-Gaxiola, M.D., NAMI California 1st Vice President;
Caliph Assagai, Legislation and Public Policy Director; Jessica Cruz,
NAMI California Executive Director; Assemblyman Sebastian Ridley-
Thomas, chair of the Assembly Select Committee on Mental and
Behavioral Health.

In 2008, Congress declared July as National Minority Mental Health Awareness Month (NMMHAM) in honor of author and advocate, Bebe Moore Campbell. Her close experience with a family member living with a severe mental health condition compelled Campbell to write multiple books on the topics of mental illness, treatment and recovery within a family setting. But she did not stop there.

Campbell fervently believed that the national dialogue surrounding mental illness should acknowledge diverse communities. She became a prominent advocate for mental health education and support for minority populations. NMMHAM is inspired by Campbell’s efforts to include people of all communities and backgrounds in the national conversation on mental illness and increase awareness of mental health issues that, without distinction, affect us all.

Minority Mental Health Is Not a Minor Issue

As Campbell emphasized, mental illness is associated with unique concerns for minority groups. Research shows that stigma towards mental illness is especially high in minority communities, making it more difficult for individuals to talk about their concerns with family members and peers and discouraging them from seeking treatment. In Campbell’s own words, “People of color…feel the stigma more keenly. In a race-conscious society, some don't want to be perceived as having yet another deficit”. People from culturally diverse groups often face additional barriers to mental health care such as financial cost, accessibility of treatment and language difficulties.

Every person dealing with a mental health problem should have access to quality care. Every community should be aware of the importance of mental health, the sings of mental health conditions and where to find the support they need. This is why NMMHAM is an exceptional opportunity to spread the word about these issues, raise awareness and mobilize communities.

Let’s Celebrate!

During the month of July, to celebrate NMMHAM and honor Campbell’s legacy, NAMI State Organizations and Affiliates across the nation will be focusing on how we can better address the mental health needs of people from culturally diverse groups and increase awareness of minority mental health issues locally.

The celebration kicked off on June 26 with an exciting legislative event organized by NAMI California at the State Capitol building in Sacramento. Together with Assemblyman Sebastian Ridley-Thomas, NAMI California leaders presented a resolution proclaiming July as National Minority Mental Health Awareness Month state-wide. At the event, a variety of speakers testified to the importance of recognizing minority mental health, including Senator Jim Beall, who recently led efforts to enforce mental health parity in the state budget, and individuals from diverse backgrounds who shared their experiences dealing with mental illness.

Many additional exciting and creative events are planned for this month ranging from art shows and music festivals to educational presentations and forum discussions. We encourage you to join us in celebrating mental health awareness and diversity!  

Here are some suggestions for things that you can do to spread the word about the importance of minority mental health:

  • Share your unique story about how you or someone you love has been affected by mental illness to let others know that they are not alone. We’ve put together some tips about including information about your community when sharing your story for NMMHAM. 
  • Participate in our July 10 NMMHAM Celebration webinar on bridging the gaps in access to culturally competent mental health care and support for minority communities.
  • Share information about NMMHAM on your social media profile. “Like” the NMMHAM page on Facebook and use the hashtag #MinorityMentalHealth to join the conversation on Twitter. 
  • Visit www.nami.org/nmmham for more resources and ideas on how to get involved.

Mental illness affects people of all cultures, identities and backgrounds. Let’s promote awareness and encourage understanding this July. Let’s make a difference.

Tuesday, June 24, 2014

Enough is Enough: Regulate Restraint and Seclusion in Schools

By Corinne Ruth, NAMI policy intern and Darcy Gruttadaro, director of the Child and Adolescent Action Center

The need to regulate restraint and seclusion in our nation’s schools just gained significant momentum with the release of a new report and an NPR article that highlights the need for immediate action. ProPublica analyzed data released by the U.S. Department of Education showing that there were 267,000 instances of restraining or secluding children in schools in one school year. The NPR article highlights an incident in which a young boy with autism panicked after being threatened with seclusion. When school officials tried to force him into the “quiet area” a small locked room, bones in his hand were crushed.

Despite claims that schools are limiting the use of restraint and seclusion, these unacceptably high numbers suggest otherwise. Some schools reported restraining or secluding students dozens and even hundreds of times each year. In 75 percent of these cases, restraint and seclusion was used with children with a disability including mental illness. Many of these instances of restraint and seclusion were improperly used when an emergency did not exist.

Congress has introduced The Keeping All Students Safe Act (HR 1893, S. 2036) to protect children from the unnecessary and harmful use of restraint and seclusion. This legislation allows restraint to be used when a student’s behavior poses an immediate danger of physical harm to that student or anyone else. For example a student may be restrained if they are striking other students, banging their head against the wall, “gouging their eyes”, or other related behaviors. In cases when restraint is used, the bill requires schools to notify the child’s parents and work with them to plan ways to better manage difficult behaviors in the future. The Keeping All Students Safe Act fosters a positive learning environment in schools by promoting interventions that help minimize disruptive classroom behaviors and instructing school staff in more effective ways of addressing students who may be in crisis.

Momentum is building for this legislation and we urge you to be a part by contacting your Congressional representatives to ask for their support and to use their leadership to move the legislation forward to a vote.