Tuesday, October 27, 2015

Bipolar & Severe Irritability Research Studies

NIH Bipolar & Severe Irritability Research Studies: Enrolling Participants Nationwide

Do You Have A Child with Bipolar Disorder or Severe Irritability?

At the NIH Clinical Center in Bethesda, Maryland, several research studies are being conducted into the causes of bipolar disorder and severe mood dysregulation (SMD). These studies seek children and adolescent participants who have bipolar disorder or severe irritability.

All evaluations, research procedures, inpatient (day or full hospitalization) and outpatient visits are free of cost. Both parent and child must agree to the child’s participation. Schooling is provided during inpatient care. Children and parents are compensated for participation. Travel and lodging expenses are paid by NIMH.

Bipolar Disorder

Those eligible to participate must be ages 6-17, have bipolar disorder and be able to perform research tasks including neuroimaging, computer tasks, and neuropsychological tasks.

This is an outpatient descriptive study using brain imaging and clinical assessment. Study participation begins with an initial outpatient evaluation that lasts one day. Subsequently, testing and brain imaging occur at visits which last two-three days, occur every year, and continue until age 25. Phone contact occurs every six months in between visits.


Severe Irritability

Those eligible to participate must be: ages 7-17; displaying symptoms of chronic anger, sadness, or irritability, as well as hyperarousal (such as insomnia, distractibility, hyperactivity) and extreme responses to frustration (such as frequent, severe temper tantrums); able to perform research tasks that include neuroimaging, computer tasks and neuropsychological testing. Participants must currently be in treatment with a physician, medically healthy, and not currently hospitalized, psychotic, or suicidal.

Non-Treatment Study

This is an outpatient descriptive study using brain imaging and clinical assessment. Study participation begins with an initial outpatient evaluation that lasts one day. Subsequently, testing and brain imaging occur at visits which last two-three days, occur every two years, and continue until age 25. Phone contact occurs every six months in between visits.


Treatment Study

If unstable on current medications participant receives day or full hospitalization to discontinue medication and participate in a 12- to 15-week study of the efficacy of methylphenidate plus citalopram, vs methylphenidate plus placebo, for decreasing irritability in children with severe mood and behavioral problems. (If clinically appropriate, participants who received methylphenidate plus placebo will be offered the opportunity to receive methylphenidate plus citalopram at the end of the study.)


To find out about study criteria and qualifications, or for more information, please call (301 496-8381) or email us at bipolarkids@mail.nih.gov.

Friday, August 7, 2015

Why Should I participate in a Clinical Trial?

NIMH, part of the National Institutes of Health (NIH), supports research studies on mental health and disorders. Clinical trials are part of clinical research and at the heart of all medical advances. Clinical trials look at new ways to prevent, detect, or treat disease.

Choosing to take part in clinical research is an important personal decision. Your decision to participate will depend on your interests, needs, and expectations about research. For basic information about clinical research and to help you make a decision about whether to participate, please visit “NIH Clinical Research Trials and You” at http://www.nih.gov/health/clinicaltrials/ . This website will help you learn more about clinical trials, why they matter, and how to participate.

Finding a Clinical Trial

Around the Nation and Worldwide

NIH conducts clinical research trials for many diseases and conditions, including cancerAlzheimer’s diseaseallergy and infectious diseases, and neurological disorders. To search for other diseases and conditions, you can visit ClinicalTrials.gov.
ClinicalTrials.gov [ Tips for finding trials on ClinicalTrials.gov ]
This is a searchable registry and results database of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov gives you information about a trial's purpose, who may participate, locations, and phone numbers for more details. This information should be used in conjunction with advice from health care professionals.

At the NIH Clinical Center in Bethesda, Maryland

Search NIH Clinical Research Studies
The NIH maintains an online database of clinical research studies taking place at its Clinical Center, which is located on the NIH campus in Bethesda, Maryland. Studies are conducted by most of the institutes and centers across the NIH. The Clinical Center hosts a wide range of studies from rare diseases to chronic health conditions, as well as studies for healthy volunteers. Visitors can search by diagnosis, sign, symptom or other key words.

Join a National Registry of Research Volunteers

ResearchMatch External Web Site Policy
This is an NIH-funded initiative to connect 1) people who are trying to find research studies, and 2) researchers seeking people to participate in their studies. It is a free, secure registry to make it easier for the public to volunteer and to become involved in clinical research studies that contribute to improved health in the future.

Thursday, May 21, 2015

People Not Prisons: Utahns Need to Speak UpFor Our Neighbors Behind Bars

NAMI Utah hosted a press conference today to address the rhetoric surrounding prison relocation. NAMI Utah is part of People Not Prisons, a loose coalition of advocacy groups working on behalf of people with a mental health condition, people recovering from substance use disorders, and individuals trapped in Utah’s criminal justice system.

People Not Prisons (PNP) is concerned with ongoing rhetoric about correctional facilities and the people within them. We believe that the public and its elected officials should be focused on improving conditions, programs and policies that impact the human beings in our criminal justice system – rather than arguing about the location of the new prison.
 “About 95% of the people who are currently in Utah state prison beds will be released back into their communities.” Says ACLU of Utah Public Policy Advocate Anna Brower. “For our own safety, we need correctional facilities that work”.

The People Not Prisons Coalition includes:
Utah Support Advocates for Recovery Awareness (USARA)
Utah Association of Addiction Treatment Providers (UAATP)
Odyssey House
First Step House
Disability Law Center
Utah Prison Support
New Roads Behavioral Health
Utah Prisoner Advocate Network (UPAN)
The Catholic Diocese of Salt Lake City
Utah Association of Addiction Treatment Providers (UAATP)

Friday, April 10, 2015

No Care for Us


Non-Medicaid Expansion States Block Uninsured People with Serious Mental Illness from Receiving Affordable, Needed Treatments
Prepared by Joel E. Miller, James K. Finley, Rebecca Gibson and Whitney Meyerhoeffer

A new groundbreaking study from the American Mental Health Counselors Association (AMHCA) shows that nearly 570,000 people diagnosed with a serious mental health condition, would have received affordable, needed treatments, but were denied access to services because several states refused to participate in the new Medicaid Expansion Program. The federal government would have paid 100 percent of the treatment costs; the monies were already included in the federal budget. The comprehensive study also highlights that 458,000 fewer people would have avoided a depressive disorder mainly by securing health insurance through the Medicaid Expansion Program.

The study, entitled “Access Denied: Non-Medicaid Expansion States Blocked Uninsured People with Serious Mental Illness from Receiving Affordable, Needed Treatments” shows that on a state-by-state basis, thousands of uninsured people who had been diagnosed with a serious mental health condition on January 1, 2014, and residing in the 24 states that did not expand Medicaid under the Affordable Care Act, were denied affordable, needed care throughout the year.

Utah has 15,312 uninsured people ages 18-64 with a serious mental health disorder who were projected to access services under Medicaid expansion. 

Thursday, March 19, 2015

2015 Utah Legislative Review

2015 Utah Legislative Review

Healthy Utah/Medicaid expansion
As you are aware by now, Healthy Utah (Utah’s version of Medicaid expansion) passed the Senate but it failed in the House. On the last day of the legislative session, a special committee was created, made up of Governor Herbert, Lt. Governor Cox, Senate President Niederhauser, Speaker Hughes, Senator Shiozawa, and Representative Dunnigan. They studied the Medicaid expansion plan over the coming months and will have an agreed upon solution by July 31st with a special session to happen shortly after. So stay tuned!

Criminal Justice Reform
The Criminal Justice Reform legislation was an outcome of the policy recommendations of the Utah Commission on Criminal and Juvenile Justice (CCJJ). House Bill 348 is a massive piece of legislation with positive implications for the reform of the criminal justice system. There are a number of improvements regarding the treatment of inmates that have a mental illness and alternatives to incarceration for non-violent offenders with a mental health condition and/or substance use disorders. The bill also requires the Department of Corrections and the Division of Substance Abuse and Mental Health to track performance and outcomes, establish standards for mental health and substance abuse treatment, and analyze specified programs, among other administrative requirements. Almost $12 million was allocated to help HB348’s policy changes. But the most important change that still needs to happen is to expand Medicaid in Utah for proper mental health and substance use disorder treatment.

Suicide Prevention Legislation
House Bill 209 mandates that certain behavioral health professionals must complete a minimum of two hours of suicide prevention training in order to obtain or renew a license. This does not apply to all behavioral health professionals or physicians.
House Bill 364 provides additional funding for suicide prevention and anti-bullying programs to the Utah State Board of Education and to the Division of Substance Abuse and Mental Health.

School Safety & Crisis Line
Senate Bill 175 will improve behavioral health services in our state. This bill provides funding for a statewide crisis text line service focused at youth who face bullying, abuse, and/or suicidal thoughts. Also, it will handle tips concerning threats of violence or criminal activities related to schools.

We recommend reading the Disability Law Center legislative wrap-up and ACLU Utah’s blog entries on Criminal Justice Reform.

Friday, January 23, 2015

Crazy: A Father’s Search Through America’s Mental Health Madness

Several years ago when I was dealing with two children who had mental health issues and doing a lot of “Why me?” “Why us?” and “Why THEM?” thinking, I heard of an organization called NAMI. It sounded intriguing, so I did a little investigating and heard about a conference they were having that focused on providing families and individuals with information on how to successfully handle the myriad of challenges that arise whenever you’re dealing with mental illness.
I signed up immediately.

The conference began with various speakers, which I figured I’d try to stay awake through until we got to the really interesting stuff, which was the WORKSHOPS. Then the keynote speaker started talking, and I was spellbound. Seriously. There was definitely some magic dust floating around.

The speaker’s name was Pete Earley, and even though I was impressed by the fact that he was an important journalist and had been nominated for a Pulitzer Prize for his book, Crazy: A Father’s Search Through America’s Mental Health Madness, I was more impressed that he was a parent just like me – a parent who had experienced his own frustration, confusion, sadness, anger, and yes, hopefulness – when it came to trying to find help for his child. Pete Earley’s reputation, resources and contacts may have been different than mine, but the obstacles we faced were the same.
I had the pleasure of being able to speak briefly with Mr. Earley after his presentation. He was off to catch a plane to who knows where (someplace exotic, I’m sure), but for that short period of time we were just two parents who understood each other, and who wished the world were just a little bit different for our children.

I encourage you to come experience the magic for yourself. An Evening with Pete Earley  

Wendy Fayles
Family Mentor
NAMI Utah 

Wednesday, September 3, 2014

Lisa's Reason for Walking

Lisa e-mailed us today to tell us that she'll be walking on Saturday. Here's what she had to say:

My Name is Lisa. I’m participating in the NAMI 2014 walk in Salt Lake City UT. I’m doing this walk in honor of myself. I have Bipolar. I take a mood stabilizer everyday to help me with the highs and lows of this disorder. It’s amazing just how much of my life Bipolar effects. I’m still the amazing woman I've always been. A caring mother, sister, daughter and friend. But I have my manic days and I have my depressed days. Some days I want to be everywhere doing everything and some days I want to sit alone in my room all day. I do talk speak publicly about Bipolar. I’m not ashamed to have this disorder. Why should we be? If anything we are true warriors of hope and life and love. To live each day sometimes not knowing when the feeling ….the high or the low is going to come back because you know it always does. I always do my best to keep a positive attitude about my disorder. I take great pride in being able to participate in somethi
ng as big as reaching out and helping others that live/suffer from a mental illness.

Join us this Saturday for the NAMIWalk! Registration is free: www.namiwalks.org/utah

Thursday, April 3, 2014

See You Later

Good-byes seem so finite. So we're saying "See you later" to our dear friend, NAMI advocate, amazing mother, incredible co-worker and the sunshine in our lives.

Sarah Gilbertson has been working at NAMI Utah for the past 3 years now and she has brought so much joy and happiness to our office. Her jovial voice can be heard across the hall and her laughter can be heard across the street! We had a little "See You Later" party for her the other day and we all went around the room sharing memories of Sarah. It probably sounded like a circus in that boardroom from all the laughing and then subsequent crying.

Sarah is amazing, if you don't know her she has conducted our Provider Education training, click HERE for more details, and coordinated all of our Teacher and Facilitator trainings. She has built incredible relationships with community partners, providers, panelists and so many others who hold a special place for her in their hearts.

While Sarah is so upbeat, positive and always smiling, she and her beautiful children have been dealing with their own struggles with mental illness. You can read her story, in her own words, on her blog HERE.She is leaving NAMI to take care of her beautiful children full-time.

Even when her days start out rough with her kids, she comes around to everyone's office, offering them a hello or if they're lucky, like me, a hug. She is the epitome of a NAMI advocate and we have been so blessed by her presence here.

Luckily for us, she will remain a huge part of our lives here at NAMI and has even decided to help with the NAMIWalk this year. We couldn't be more grateful for her dedication to this cause! 

When I think of Sarah, I think of this quote to the left from Story People. It says, "Anyone can slay a dragon, he told me, but try waking up every morning and loving the world all over again. That's what takes a real hero." Sarah is our real hero. She wakes up every morning and loves the world all over again! And we love her right back! 

So Sarah, we aren't saying good-bye, no way! We are simply saying, "See you later!"

Wednesday, August 7, 2013

What Happens in Class, Stays in Class

With the next round of NAMI Utah’s class for teens, Progression, coming up, you may ask yourself – “why should I sign up? Why should I go if my parents aren’t dragging me?” And to that, I say, “Dude, you are missing out!” Progression is a great class where you can learn about dealing with your problems instead of just letting them drag you through life, all while being taught by teachers who have been there, and been there recently. No detention or quizzes here; just real talk from people who have dealt with what you’re dealing with, and people who are honest, open, and unashamed of their experiences. These teachers will give you
the tools to be proactive about your illness instead of just letting it rule your life. Oh, and did I mention we have an opportunity for you to meet other people your age that are dealing with the same problems? There is no judgment in Progression, and everything you tell the class is confidential. I call it “The Vegas Rule” – what’s said in class, stays in class. What could be better than that?

I haven’t yet mentioned my personal favorite part of Progression – they have been coined “Emotional First-Aid Kits” but I personally thought the name could use a change, so every class gets to call it what they want. What is an “Emotional First-Aid Kit”, you might be asking? These Kits are small boxes that you decorate with supplies we provide, and fill with things that make you feel better when you’re down. Love listening to some smooth R&B jams to chill you out? Pop that iPod in the box! Is a bubble bath more your speed? Tuck a few bottles away in the box! Snuggly stuffed animal from your younger days your go-to? Put that little critter in his new home! These Kits, like Progression, are all about you – how your mind works, how to cope, how to communicate, how to just be you. And you, you will find out, are pretty darn rad – illness or not.

To sign up for Progression, call NAMI Utah at (801) 323-9900. Progression, like all of our classes and support groups, is totally FREE! (And totally awesome, I might add.)

Erin is a Whole Health Care Manager and Mentor at NAMI Utah and is a teacher, teacher trainer, and state trainer for Progression, having taught nearly a dozen classes and trained many people both in Utah and Minnesota in the Progression program. She also likes to think she is pretty cool – most days!

Wednesday, June 26, 2013

Brian Daniel Wynn 1975-2012

A message from Dan and Alice Wynn, who gathered donations for NAMI Utah from friends and family in honor of their son, Brian Daniel Wynn:

With rising recognition and emphasis being placed on mental illness and many related tragedies taking place across our country every day, we have collected donations for NAMI in memory of our son, Brian Daniel Wynn, who passed away unexpectedly on February 13, 2012 due to complications arising from mental illness and addiction. Brian, a very kind and soft spoken spirit, often displayed a sincere concern for other who were struggling or in need. However, in the end, he could not overcome his own trial and demons and was unable to obtain the treatment he needed in a timely manner, which may have saved his life. 

Thank you for your dedication to building better lives for the millions of Americans affected by mental illness. 
Dan and Alice Wynn

Dan and Alice, thank you for your donation and most importantly, thank you for your willingness to raise awareness of mental health issues and suicide. We have no doubt that Brian would be proud of the work you are doing! Stay strong, continue to shed light on these issues and take care of yourselves and each other. Remember that you are not alone!
Thank you so much,