Lee Smith, the well known North Carolina author, is a member of NAMI Orange County. When Ms. Smith’s son Joshua Seay died in October, 2003, she generously directed donations to NAMI North Carolina in Josh’s memory. She is now involved in a project to raise more funds for NAMI, again as a memorial to Josh.

As stated in Josh Seay’s obituary in the Herald Sun, 10/20/03:

Lee Smith recently called the NAMI North Carolina office to invite us to be a part of an event at Fearrington Village in Pittsboro, on Saturday March 6 at 11:00 am. This event would be a of a tribute to Lee’s son. Ms. Smith said that Nancy Olson, the owner of Quail Ridge Books & Music in Raleigh had initiated the idea of using a book-signing as a fundraiser for NAMI. What better occasion than the release of a book about mental illness? Ms. Olson contacted other bookstores and got the ball rolling.

On the occasion of Virginia Holman’s book Rescuing Patty Hearst coming out in paperback, Quail Ridge Books & Music, McIntyre’s Fine Books, Regulator Bookshop, Country Bookshop, and Branch’s Chapel Hill Bookshop will be holding a book-signing at the Barn at Fearrington Village. Among other North Carolina authors who will be there are Kay Gibbons (who will be the moderator), Lee Smith, Hal Crowther, James Seay, and Jackie Shelton Green.

NAMI North Carolina will have a display and Wake, Durham and Orange County members are urged to turn out. Everyone is welcome. Come join us March 6.

Highlights of the First 20 Years

At our 2004 Spring conference, on Friday, April 23rd, NAMI North Carolina will celebrate twenty years of advocacy and service. There will be a 20th birthday dinner party at our 2004 Spring Conference.

Three of the founding members of NAMI North Carolina, Paul and Marcia Garatt and Elaine Purpel have lined up an agenda you won’t want to miss.

NAMI national founding members, Jim and Carol Howe will be there. Jim was President of NAMI in the early years. He and Carol were involved in bringing together the support groups that formed NAMI 25 years ago.

Agnes Hatfield, PhD, another former president of NAMI and its first professional spokesperson, will also be on the agenda. Dr. Hatfield, a professor at the University of Maryland, was way ahead of her time when she told our families, and the professionals, that families do not cause mental illness. She said that the mental illness caused families to appear unhealthy to the professionals, and assured us that we were coping with catastrophic events in a normal way. Agnes was the keynote speaker for NAMI North Carolina’s first conference in 1984.

There will be musical excerpts from Balancing Act by the unforgettable Wambui Bahati. If you haven’t seen Wambui perform, you are in for a real treat!

Anniversaries are celebrated through memories. Whether you have belonged to NAMI North Carolina for twenty years or twenty days, what stands out in your mind as a memorable moment? Was it meeting a kindred spirit, someone who thoroughly understood what you were talking about? Was your memorable moment a conference you attended? Was it the first conference you attended and saw hundreds of other people who were struggling to understand and cope with mental illness?

Was it a Family-to-Family class you attended? Was it when you learned that you could laugh despite your sorrow and sadness? Was it a person who inspired you? Was it a project you were involved in?

NAMI NC's 20th anniversary includes a celebration of those special moments for each of us. We will have a short time at the conference banquet on Friday, April 23rd to share each person's memorable moments of our 20-year history. Please think about the memory you want to share. There will be 30 to 45 seconds for each person to share a memorable moment. If you don't want to stand at the microphone, write out your memory and someone else will read it for you. These shared moments are threads in the tapestry of NAMI North Carolina's history.

NAMI North Carolina’s Consumer Council is a group of consumer members who have been selected by their local NAMI affiliates to represent a consumer perspective to the NAMI North Carolina Board of Directors. The Consumer Council was established as an advisory group that makes recommendations to the Board regarding consumer activities and initiatives. The eventual goal is to have a consumer representative from each local NAMI affiliate, with an alternate designated to attend meetings and/or act on behalf of the consumer representative should that person be unable to attend.

The general purpose of the Consumer Council is to advance the activities and involvement of those NAMI North Carolina members who have experienced a serious mental illness, who are in recovery, and who have time and energy to work on advocacy issues and program development.

The next meeting of the Consumer Council is Friday, April 23, at the NAMI North Carolina Spring Conference. The agenda will include discussion of the consumer web page (under construction); the adoption of Consumer Council Standard Operating Procedures, which will govern items such as membership, lengths of terms and council duties; and various programs and activities of interest to consumers across the state.

The Consumer Council is arranging for a limited amount of table space at the Spring Conference for consumers who have special talents in poetry, art, writing, or small crafts, to sell their work. If you are interested in reserving table space, please contact K. Hardy no later than March 26, as space will be limited to the first 6-8 talented consumers who call (Contact information follows)

Important Note: If you are a NAMI Consumer Council Representative or Alternate, please contact K. Hardy to update the Consumer Council contact list: jbirdham@access-4-free.com or call 336-229-4113.

Thanks so much to the quilters who have responded. I look forward to seeing you and others in NAMI North Carolina at the Spring Conference where we will have the quilt displayed for all to see.

Fundraising Raffle at Spring Conference

NAMI members who are serving on local CFACs are invited to a pre-conference session on the evening of April 22 at 7:00 p.m. at the North Raleigh Hilton. At this important session we will share information and strategies as well as provide valuable input for the Policy Committee of the Board in refining NAMI North Carolina’s public policy agenda.

Please let us know if you can attend so we can make sure adequate meeting space is secured. You can respond via email to Beth Hardy at Drbethg@aol.

Mark your calendars for this important meeting!

Charles Curie, Administrator of SAMHSA (Substance Abuse and Mental Health Services Administration) will be our Spring Conference keynote speaker on Friday morning, April 23. His topic will be the New Freedom Initiative in public administration of mental health services, a plan that calls for the transformation of Mental Health Care in America.

Another presenter, Beth Melcher, PhD. has a grant from SAMHSA, The North Carolina Science to Service Project. Beth will hold a workshop about “best practices,” also known as “evidence-based practices.” These terms refer to the goal of determining through scientific means which are the best methods for providing services, and how they are used.

SAMHSA is an agency of the U.S. Department of Health and Human Services, established in 1992 with a mission of “improving the quality and availability of prevention, treatment, and rehabilitative services in order to reduce illness, death, disability, and cost to society resulting from substance abuse and mental illness.” The agency supports the adoption, adaptation and evaluation of evidence-based, high-quality diagnostic, treatment and prevention service practices. SAMHSA offers block grants to states to address substance abuse and mental health needs. They gather data and report on trends related to mental health services, addiction treatment , and substance abuse prevention with a budget of over $3 billion for the following outcomes:

SAMHSA programs have resulted in significant improvements in how the nation responds to substance abuse and mental illnesses.

Last year my family and I moved to far western North Carolina and, in addition to having the privilege of living in these incredibly awesome Smoky Mountains, I have been given the opportunity to be on the ground floor of developing a peer workforce within the Smoky Mountain Center (SMC) LME catchment area.

To give you some history here, I will travel back about a year in time to when Dr. Kim Franklin, the Clinical Services Director at SMC, attended an event where Steve Pocklington, Deputy Director of Neuse LME, shared his personal story of recovery before proceeding to outline the direction toward wellness and recovery he has introduced at Neuse ... And a dream was born. To make her dream a reality here in beautiful western NC, Kim has literally moved mountains (forgive the pun) - of bureaucratic red tape - and worked countless extra hours.

To demonstrate her level of commitment, she and Anne Davis, HR trainer for SMC, attended a WRAP (Wellness Recovery Action Plan) facilitator training given by Mary Ellen Copeland in Vermont. As her vision enlarged, Kim began to recognize the value of peer to peer relationships and this is where I came into the picture.

In September, seven people, six key administrative staff members at SMC, and I, visited MetaServices, a recovery focused service provider, located in Phoenix, Arizona. During this week, Kim and Anne were trained to implement and teach the Peer Support Specialist program developed by Meta. In December, four of us became the first in this area to graduate with the credentials of Peer Support Specialist. Kim's vision is seeing Peer Support Specialists employed in this area in a variety of settings - ACT teams, Peer Bridgers, etc.

And...thanks to the NC Mental Health Consumers Organization who received a grant from the Best Practices Division to train WRAP facilitators throughout NC, we are able to have that credential as well.

In March we are planning two conferences here to introduce the principles of wellness and recovery to the community and are casting a wide net in our invitations to participate - consumers, family members, law enforcement officials, school personnel, advocacy groups, etc. If you are interested in attending or have any questions, please contact me at 828-524-1355 or e-mail: wloghouse@juno.com.

As we have learned through these trainings, EVERYONE, even those having the most serious psychiatric symptoms, CAN recover their wellness, even though he/she may continue to experience some symptoms. And this through the principles of Hope, Personal Responsibility, Education, Self Advocacy and Support.

Mark your calendars! Saturday, May 15, 2004 is our chance to make a big public awareness and fundraising splash in North Carolina. This is the date for NAMI North Carolina and your local affiliate to join hands in NAMIWalks. This big fundraising event is being held in many states across the nation during the month of May, and represents your chance to bring your advocacy to new heights. This also represents your chance to support your affiliate and your state office. Funds raised by affiliates will be shared equally between the state office and the local affiliate. If your affiliate raises $2000, $1000 of that goes to your affiliate bank account. So, the success of this event depends on all our affiliates and all our members getting involved.

This event is co-sponsored by NAMI Charlotte (the host affiliate) and NAMI North Carolina. All affiliates are encouraged to organize teams to participate in this day of fun and fund-raising. Your affiliate president is receiving packets of materials describing the details of the event and all the ways local NAMI affiliates can participate. The best part is that even if you cannot go to Charlotte on May 15, you can still make your presence known from your own home. Even those folks who cannot participate as a walker can participate as a team member, advance organizer, or a sponsor.

Additional information about NAMIWalks is on the NAMI Charlotte website, namiwalks@nami-charlotte.org. You will find detailed descriptions of the levels of sponsorship for the NAMIWalks event. Other important organizational materials and good ideas for building your teams are on the website as well as in the packets sent to your affiliate president. Start talking with your affiliate leaders and fellow NAMI members now to brainstorm ways your affiliate team can raise that $2000, or much, much more. Send letters to all your relatives, friends, neighbors and colleagues asking them to sponsor you as a walker, or sponsor your affiliate team. You and your members might also approach mental health agencies and organizations, hospitals and clinics to suggest that they organize their own teams to join NAMIWalks. Corporate sponsors are also critical to the success of this event. Ask business leaders in your area to support our efforts to further the NAMI mission. AstraZeneca has already stepped up to the plate as an early sponsor. Other organizations already on board are DBSA (Depression and Bipolar Support Alliance) Mecklenburg, and Inner Vision (a clubhouse mental health service provider in Charlotte).

Remember, to ensure the success of this huge project, every affiliate needs to be represented at this fundraiser. Look for your affiliate information packet and get the message out to all your members as soon as possible.

For further information on how to become involved with NAMIWalks, contact your affiliate president. Those who raise more than $100 will receive a T-Shirt commemorating this event.

NAMI Coastal Division has taken on a project that may result in a new affiliate in Nags Head. While John Gaskill was acting as a regional Family-to-Family organizer, he contacted St. Andrew’s by the Sea in Nags Head. The church agreed to pay for a Family-to-Family class and handle advertising for the course.

Delayed by hurricane Isabel, which struck the day before the first scheduled class, Family-to-Family has now come to Nags Head courtesy of St. Andrew’s, NAMI Coastal Division and teachers John Gaskill and Bill Abbruzzese who just happen to live in Beaufort.

Take a look at a map, and you will see that unless you have a private airplane, it is no quick trip from Beaufort to Nags Head, and the course is twelve sessions long. John Gaskill describes the weekly round trip he and Bill make.

Tuesday morning, John picks up Bill at 8:30. They drive one hour to catch the Cedar Island Ferry. Two hours and fifteen minutes later they arrive at Ocracoke Village. Since the hurricane wiped out a bridge there, the one remaining route to the northern part of the island is only open for 15 minutes an hour, the time it takes to get to the next ferry, which is a 40 minute ride to Hatteras Village. They then drive another hour and a half to Nags Head. Arriving about 3:00 in the afternoon, John and Bill use the church copier to make their handouts for that night’s class. Wednesday afternoon around 3:00, John drops off Bill at his home. NAMI Coastal Division donated a $100 to buy a commuter pass for the ferry rides. A member contributed a $50 gift certificate for Staples that she won as a door prize, and they bought binders for the class. A realtor, who is a St. Andrews member, arranged for John and Bill to stay overnight once a week for free at a beach property.

March 30, Beth Greb will attend the last meeting of this amazing class to help the group organize a new affiliate in Nags Head.

NAMI Coastal Division has also received another grant for Family-to-Family from the Carteret Community foundation. They asked the foundation for $500 to put on a Family-to-Family class for their affiliate. The foundation asked if they could conduct two classes this year, and when they said yes, Cartert Community Foundation gave Coastal Division a grant of $1000 instead of the $500 they requested.

NAMI Four Seasons has received community support for their February Family-to-Family class. Pardee Hospital has given the class free space at the Blue Ridge Mall and has paid for advertising the class. Mountain Laurel Community Services (the new non-profit service provider), Park Ridge and Transylvania Community Hospitals have each given $100 to NAMI Four Seasons hold the class. Family-to-Family

Coordinator Bob Andersen says there are over twenty people signed to attend the class. “I was surprised that no one turned me down,” says Bob. He thinks any group could do the same. It was easier than he thought.

NAMI Rockingham County sponsored a Christmas Angel Tree Project for children who are clients of the Rockingham County Area Program and for children of adult clients of the program. Kim Brust, who is a Dual Diagnosis Counselor at Rockingham County Area program and a member of NAMI Rockingham, spear-headed this project. She was surprised how many children wanted sheets, comforters and other items for their rooms.

“Kim was responsible for this generous thing that NAMI Rockingham was able to do, “ said Carol Matthieu, President of NAMI Rockingham. Many of these families have only the most basic things, she said. “This was one of the most grateful groups of parents you’ve ever seen in your life.”

NAMI Rockingham went to restaurants, businesses, individuals and church groups to get them to sponsor specific children. Some funds were pooled for larger items, including bikes for seven youngsters. About 40 children up to the age of 17 received these Christmas presents, which were wrapped and distributed by staff at the area program.

NAMI Western Carolina, at their holiday party in December, honored some of its outstanding members. Bob and Nancy Carey were honored for their advocacy in Mental Health Reform this past year. Ms. Jack Benning received a certificate and a plaque from past president Dan Lane, who called Jack “the consummate NAMI advocate.” Betty Lane said, “She convinces us-her friends-with her knowledge, warmth and zeal, and invites politicians to make a deal.” As an octogenarian, Jack is still active, mentoring two families with the NAMI Young Families program. Ms. Benning said, “I don’t deserve this, but then again…”

Advocacy for People with Mental Disabilities = Bazelon

For three decades, the Bazelon Center for Mental Health Law has been the nation’s leading legal advocate for people with mental disabilities. Their litigation has fought against institutional abuse and won protections against arbitrary confinement.

Part of their work is to ensure that people with mental disabilities have the right to be independent, free from coercion or invasion of privacy and to maintain dignity. Bazelon continues to defend the rights won by people with mental disabilities in recent decades.

The Bazelon Center does not handle individual cases, but focuses on providing technical support to legal service programs, protection and advocacy systems, and collaborates with local, regional and national advocacy and consumer organizations.

They publish handbooks, manuals, issue papers and reports explaining key legal and policy issues in everyday terms. To review this material, access www.bazelon.org.

A major issue for the center is opposition to large group homes or adult care homes which segregate persons with mental disabilities from the rest of the community. As policy, the Bazelon Center does not support involuntary outpatient commitment, but strongly supports parity in medical insurance.

Transcranial Magnetic Stimulation for Depression

Transcranial Magnetic Stimulation (TMS) uses very short pulses of magnetic energy to stimulate nerve cells in the brain. Today, researchers are testing TMS to determine if it can help improve mood in patients with major depression. Based on previous clinical trial results, researchers are interested in further investigating the potential anti-depressant effects of TMS.

The physician aims the short pulses of magnetic energy at the front left portion of the brain, which is thought to affect mood. During the treatment, the amount of electricity created in the brain is so small that a person would not feel it.

The objective of TMS is to stimulate brain cells without causing a seizure. The patient remains fully awake and aware throughout the entire procedure.

The trial consists of thirty treatments during a six-week period. Treatments are scheduled one per day, Monday through Friday, and take 45 – 60 minutes to complete. No anesthesia or medication is required. Procedures are done on an outpatient basis. The patient can go about his normal routine after the session. Patients will need to complete periodic paper work and interviews. All trial related medical care is provided at no cost.

Some disqualifying factors are prior TMS treatment, metal objects in one’s head, or being pregnant. Patients with bipolar or Obsessive Compulsive Disorder are disqualified. Prior treatment with Electro ConvulsiveTreatment, which did not help, having increased cranial pressure, intracardiac lines, or a significant neurological disorder are other reasons for disqualification.

There are some risks to this treatment. A physician and patient will discuss risk factors in the treatment before the patient agrees to the procedure. Contact: Clinical Trial Coordinator 610-640-4202, ext 1020 or email trialinfo@neuronetics.com

Brain-Imaging Tools Zero in on Schizophrenia

A Magnetic Resonance Imaging technique that allows scientists to visually “peel” off the first layer of the brain and look inside has shown promising clues to a possible cause of one type of schizophrenia.

Showing images of adolescents newly diagnosed with schizophrenia, Dr. Manzar Ashtari a professor of radiology and psychiatry at Albert Einstein College of Medicine, presented the first evidence linking the disorder in youngsters to defective myelination, the white matter that insulates brain cells and allows them to communicate.

This method of MRI uses a device known as a diffusion tensor, which displays images of white matter, which had previously eluded studies in living patients.

Scientists found that a switching box in the brain called Heschl’s gyrus was defective because of insufficient myelination. Normally the switch box transfers incoming sounds to the brain’s command center, the frontal cortex, for interpretation.

Some of the most common symptoms of schizophrenia — hearing voices and other auditory hallucinations – may result from a defective switch box that doesn’t properly send messages to the command center.

If there is something wrong with the pathway that is connecting the gyrus to the frontal cortex, a person may be confused about whether a voice is coming from inside of one’s head or outside one’s head.

The findings in adolescents with schizophrenia are similar to those found in adults. Adults have more areas of the brain that appear to lack adequate myelination. That may mean that schizophrenia starts off in one area and then spreads to other areas as a person gets older, according to Dr. Ashtari.

The next step is to study younger children who may be at risk for schizophrenia to look for early gyrus changes that might be used as a diagnostic tool before full-blown symptoms develop. This work is supported by the National Institute of Mental Health (NIMH) and the National Alliance for Research on Schizophrenia and Depression (NARSAD).

If further studies confirm a lack of myelination is involved in schizophrenia, then it may be possible to develop drugs that stimulate white matter growth.

It may also be possible that certain nutritional deficiencies may contribute to the myelination defect and that special diets might be able to prevent it.

Excerpted from Brain in the News, December 2003

We all know that directors often exercise considerable creative license when they make a book into a movie. The movie was one thing. The book, A Beautiful Mind by Sylvia Nasar is something else entirely.

John Nash, PhD was born in Bluefield, West Virginia in 1928. He attended Carnegie Tech, in Pittsburgh, Pennsylania as an undergraduate in chemical engineering. His mathematical talent led him to Princeton where he received a PhD in Mathematics in two years. In 1994, Nash received the Nobel Prize for his work on Game Theory during his graduate days at Princeton.

At the age of 30, John Nash developed schizophrenia, which interrupted his brilliant career for over 30 years. Remarkably, Nash began to recover from his illness, and now in his seventies, he has resumed his career.

This riveting book goes way beyond the movie in all dimensions. Russell Crowe’s portrayal of Dr. John Nash could be compared to a two dimensional picture of the Nobel Laureate Mathematician, but the book gives the reader a three dimensional picture of the man, including his own insights into his illness from the perspective of a man who has recovered after nearly forty years of severe and persistent mental illness. Dozens of people who knew John Nash from childhood through the 1990’s were interviewed by Ms. Nasar and are quoted on their recollections. Many examples of correspondence recapture the life and circumstances of Nash. The Nash of the book is a much more complex character than the Nash of the movie. Nash himself says that he learned things he never knew from reading the book.

Ms. Nasar presents the reader with the historical context that influenced John Nash throughout his career. During his early years at Carnegie Tech and Princeton, the university system was evolving from technical to academic at a rapid pace. Still in his teens,John came to know such famous scientists as Oppenheimer and Einstein. In his early twenties, McCarthyism touched a number of his colleagues. The Cold War propelled the introduction of think tanks, and Nash worked for one of these for several years. He was very much affected by the times in which he lived.

A former economics commentator for The New York Times, Ms. Nasar is even able to make the theories on which John Nash worked at least marginally understandable to the reader.

A Beautiful Mind is a brilliantly written book.

NAMI Urges the FDA to Promptly Issue Guidance on the Use of SSRIs to Treat Major Depression in Children

Issued February 2, 2004

Arlington, VA – NAMI calls on the U.S. Food and Drug Administration (FDA) to provide clear guidance to families and mental health providers on the safe and effective treatment of major depression in children--after reviewing all of the relevant research data.

"As a psychiatrist who treats children with major depression, and mother of two children who suffer from depressive illness, there is a critical need to ensure that families nationwide understand the best way to help their children deal with the sometimes life-threatening illness of depression," stated Dr. Suzanne Vogel-Scibilia, a NAMI national board member. "We know from personal experience that selective seratonin reuptake inhibitors (SSRIs) have saved the lives of many children, and parents need the benefit of this FDA data review."

Following two conflicting reports on the benefits and risks of prescribing certain antidepressants for children and adolescents with depression, the FDA today convened a meeting to consider current research data and the need for further research in this area.

Britain’s Medicines and Healthcare Products Regulatory Agency and the FDA issued warnings last year that stated that increased suicidal ideation and suicide attempts in clinical trials were associated with the use of Paxil—a SSRI used to treat adolescents with major depression.

However, the link between SSRI use in adolescents with depression and suicide is weak, according to a preliminary report released by the American College of Neuropsychopharmacology (ACNP)—whose special task force of nationally recognized psychiatrists evaluated evidence from clinical trials and studies. This analysis led the task force to conclude that SSRI use did not cause increased suicide attempts or ideation in youth being treated for depression. On the contrary, the data reviewed by the ACNP task force demonstrated efficacy in the use of SSRIs to treat youth with major depression.

"Psychotropic medications for children with mental illnesses should be used only when the anticipated benefits outweigh the risks," stated Dr. Suzanne Vogel-Scibilia. "Research shows that early identification and comprehensive treatment can improve the long-term prognosis of children with mental illness. Research on the effectiveness of treatments is our best hope for the future."

"NAMI is concerned that any limitations on the ability of knowledgeable practitioners to treat children with SSRIs, when needed, could be damaging to children in our country—especially those with serious, life-altering illnesses," according to Dr.Vogel-Scibilia, who appeared today before the FDA committee on behalf of NAMI.

"There is some epidemiological evidence that the overall use of SSRIs has had a positive effect in reducing suicides in adolescents," said Dr. Ken Duckworth, NAMI medical director and a child and adolescent psychiatrist. "However, the field clearly needs more and better research to understand the effects of SSRIs in treating depression in children."

The discussion of pediatric medicine and SSRI use in children and adolescents must also address the critical need to ensure that all children and adolescents with mental illnesses have access to evidence-based assessments, interventions and quality clinical care. According to Dr. Vogel-Scibilia, "the lack of effective and appropriate treatment for children with mental illnesses will adversely affect a child’s overall development including the child’s ability to learn, develop self-esteem, socialize and function in the community." We simply must ensure that children with mental illnesses have access to safe and effective treatments to avoid the continued suffering and unnecessary tragedies that occur nearly every day in this country.