November 21, 2017

In This Issue
Quote of the Week:

"With engagement, implementation and intervention: recovery is possibl  "
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This edition of the NAMI-NYS E-News has all the information on our 2017 Education Conference. We also have news about signing up for health care coverage and information on the new FDA approved pill that will monitor adherence to medication.

From all of us in the NAMI-NYS family, we wish you and yours a happy, healthy and reflective Thanksgiving.

Finally we want to remind you that next Tuesday is Giving Tuesday and we hope you will consider supporting NAMI-NYS. Click here to learn more and make a donation.

As always, we want to know about the work you are doing.
Please email  [email protected] with details and pictures about your work. This way we can feature it in the E-News and print Newsletter. Showcasing your work will allow others to learn from you, and that's the best way we can grow together as an organization. 

Hope Starts With You!

The 2017 NAMI-NYS Education Conference took place on November 10-12 at the Desmond Hotel in Albany. More than 450 people attended to learn about the latest in research, treatment, advocacy and suicide prevention. Throughout the weekend the conference  celebrated recovery in all its various forms while also  presenting  realistic depictions of how the systems that deliver mental health services need to be improved. Presenters included national leaders in research and treatment from psychiatric disorders as well as people living with serious and persistent mental illnesses detailing their recovery and how they are using their experiences to help others. We want to express our deepest gratitude to all the presenters, exhibitors, sponsors, volunteers and of course our wonderful attendees who made the weekend such a success. We look forward to seeing many of you at our 2018 Conference taking place October 26-28th.

Click here to see an album of all the photos in the E-News on Facebook. While there, be sure to "like" our page. 



For many, the highlight of the conference was the inaugural NAMI-NYS Honors Leaders in Mental Health Awareness celebrations on Friday night. The celebrations began on an emotional note as honoree musician Matt Butler presented his award to his mother who was in the audience. Matt discussed how his mother was integral in his recovery and how he hopes he has made her proud. Matt's acknowledgement was indicative of the crucial role family plays in recovery. Matt then went on to play several songs from his album Reckless Son as well as a couple of new ones.  He discussed his experience playing psychiatric and rehab facilities as well as correction institutions and closed his performance with a rousing version of Johnny Cash's Folsom County Blues.

The evening's second honoree Keith O'Neil told his story, which is detailed in his new book Under My Helmet. Keith explained the determination he had that led him from being an un-drafted NFL free agent to Super Bowl champion and how that determination was needed in his struggle with bipolar disorder. He chronicled how he first noticed symptoms as a child, including the inability to sleep and his later difficulties in finding appropriate medications to manage his disease. He also explained how taking the NAMI Family-to-Family class helped his wife support him and his recovery. 

The evening's final honoree, Ron Powers, the Pulitzer Prize winning journalist and author of No One Cares About Crazy People, delivered a true call to arms presentation. While he praised Matt and Keith's recovery, he made sure the audience knew that not everyone can establish the advanced recovery of his fellow honorees. He gave a true and honest account of how too many people living with a serious mental illness are in jails or prisons, living in the streets or pass away at a far too early age. His words rang true from a perspective that only a family member of a loved one who failed to receive the proper services can truly understand. It served as a reminder that while we have a lot to celebrate we still have more work to do to ensure that all people receive the proper services. He also thanked NAMI-NYS members for all they do to support other families and for their advocacy voice.

The emotional evening concluded with Matt Butler performing his inspiring song Just One. The song captured the theme of the night as while NAMI-NYS honored three individuals who are bringing attention to mental health, we also honored our NAMI-NYS members as they are leaders of awareness in their communities. 

The conference began with special presentation by Dr. Anand Pandya, the co-founder of Disaster Psychiatry Outreach and former President of NAMI. Dr. Pandya detailed proper culturally component disaster response and the need to eliminate stigma in order to provide the best psychiatric services following a crisis and how that contributes to reducing suicide. 

Following Dr. Pandya's remarks there was a presentation of colors and beautiful rendition of the Star Spangled Banner sung by NAMI-NYS's Jean Ryan. Then Albany Mayor Kathy Sheehan joined NAMI-NYS in presenting the 2017 Criminal Justice award to Lt. Willie Flack of the Albany Police Department. 

Click here to watch a news story from the Capital Region CBS affiliate on the award presentation.

The 2017 Max Gabriel Award was presented to Sean Tuckey. The Zero Suicide panel followed the award presentation. 


Saturday began with a session on self-care and wellness strategies led by Paul Margolies, PhD, Associate Director of New York State Psychiatric Institute's Center for Practice Innovations. The session on novel clinical approaches featured Alan Fruzzetti, PhD, Program Director of the 3East Boys Intensive Program and the director of Family Services for 3East Continuum at Harvard Medical School's McLean Hospital.

As is a proud tradition for NAMI-NYS, Saturday morning also featured an update on the work conducted by the National Institute of Mental Health (NIMH).  Kathleen R Merikangas, Ph.D, Chief of NIMH's Genetic Epidemiology Research Branch, presented on her landmark community-based family study of affective spectrum disorders and their overlap with other mental disorders and medical disorders. 

The morning session concluded with the presentation of the NAMI-NYS Excellence in Research Award, presented to Kristen Brennand, PhD, Director of Brennand Laboratory at the Ichahn Medical Institution. Dr. Brennand presented on her work developing in vitro models for schizophrenia in order to identify novel insights into the molecular and cellular phenotypes of mental illness.

The lunch session featured the panel discussion Recovery is Possible
which was moderated by  John Allen the New York State Office of Mental Health's Special Advisor to the Commissioner. John detailed how prognoses for recovery have changed since he was diagnosed with schizophrenia as a young man. He also explained how at any given time he can have up to twelve voices talking to him. All panelists have overcome severe and persistent mental illness and provided their insights, stories, struggles, hopes and recovery strategies.  

Past NAMI President and current Director for the Office of Consumer Affairs and Center for Mental Health Services at SAMHSA, Keris Jan Myrick, detailed her successes but also the issues she continues to face while living with schizophrenia. These included not being taken seriously by doctors about a physical issue because they saw a psychiatric diagnosis and how when she was hospitalized she did not receive enough support from friends.

Hakeem Rahim , o ne of NAMI-NYS's leading faces of recovery told his story which has taken him from developing severe delusions caused by bi-polar disorder while at Harvard University to traveling the globe informing students about mental health, testifying before the U.S. Senate and being one of the featured faces of recovery in the New York City Thrive campaign. 

Amanda Lipp chronicled her experience of a psychiatric hospitalization her freshman year of college and how creativity, determination and support of friends and family have helped her recovery. Amanda is a filmmaker who is in the process of producing films for the NYS Office of Mental Health's OnTrackNY program. She debuted the film Sebastian which tells the story of a student at Syracuse University who has schizophrenia. 

Click here to watch the five minute film.

After an afternoon of workshop sessions, Saturday evening featured a special screening of Beyond Silence. The documentary follows the efforts of Jeff Fink, Lauren Burke and Lloyd Hale to live well and break through the silence often associated with mental illness. The film, provides a glimpse into their lives and their diagnoses-which include bipolar disorder, schizophrenia, depression and anxiety-ultimately weaving together a cohesive narrative about how speaking up is key to living well with a mental health condition. Following the screening Jeff, Lauren and Lloyd participated in a panel discussion and took questions from the audience.  


Sunday began with a presentation on Able Accounts, Medicaid managed care, the NYS Justice Center and Paid Family Leave.  That was followed by a Town Hall session with Lloyd Sederer, MD, Chief Medical Officer of the NYS Office of Mental Health. As part of his talk, Dr. Sederer showed new film vignettes based on his book Improving Mental Health: Four Secrets Hidden in Plain Sight. After a lively discussion, Dr. Sederer graciously met with many attendees in the hotel's courtyard to answer more questions and address concerns. 
The conference concluded with an Ask the Doctor with Lew Opler, MD. This marked the 30th year Dr. Opler has led such a session.

NAMI-NYS wishes to once again congratulate all of the 2017 award winners

NAMI NYC Staten Island
NAMI Orange County NY

United States Representative John Katko (R-NY-24) 

Sidney Hankerson, MD, New York State Psychiatric Institute
LT. Willie Flack III, Albany Police Department
Erin Billups, NY1 News
Sean Tuckey, Stratton VA
Paul Klein, NAMI Rensselaer
Stella Lemel, NAMI Westchester
Christine Vanasse, NAMI Rockland
Denise Duncan
Ceceile McIntosh Green
Bill Perun


Nominate Someone for the NAMI-NYS Board of Directors

The NAMI-NYS Board election also took place on November 11th, and the Board still has vacancies.  If you know of a NAMI-NYS member who would make a good candidate for the Board of Directors, please submit the application to the NAMI-NYS Nominating and Elections Committee by November 27th.  You can access the application here.
Don't Have Insurance Coverage For Mental Health? Open Enrollment Has Begun

NAMI provides all the details about how you can still sign up for affordable healthcare through the government. The deadline to signup is December 15th.

Click here to learn more.

New York News
2018 New York State Budget Will Be Challenging

Two reports issued in recent days indicate that Gov. Andrew Cuomo may be facing his most difficult budget in seven years. The midyear financial report by the governor's budget office has lowered revenue estimates by $850 million for the current budget year and the next two years. And it finds that next year's projected deficit is now at $4.4 billion, if spending growth continues unchecked. Changes to the federal healthcare program can also have a massive impact on the state's budget.

Click here to read more. 

National News
 FDA Approves First Digital Medicine System

For the first time, the Food and Drug Administration has approved a digital pill - a medication embedded with a sensor that can tell doctors whether, and when, patients take their medicine.

The approval, announced last week, marks a significant advance in the growing field of digital devices designed to monitor medicine-taking and to address the expensive, longstanding problem that millions of patients  do not take drugs as prescribedExperts estimate that so-called nonadherence or noncompliance to medication costs about  $100 billion a year , much of it because patients get sicker and need additional treatment or hospitalization.

Nonadherence is especially prevalent in those who take medication for psychiatric conditions. 

Click here to


NIMH Update

Click here to read the latest Update from NIMH.

Clinical Trial Recruitment

The primary purpose of this research study is to evaluate the safety and effectiveness of the oral drug AV-101 (an antagonist of the glycine receptor) versus placebo. The study aims to determine if this experimental drug has antidepressant effects and fewer side effects than other novel treatments for depression.
We are enrolling moderately depressed individuals between the ages of 18 and 65 with hard-to-treat major depressive disorder. This inpatient study lasts up to 14 weeks and procedures include a medication taper, taking the research drug, taking placebo and 4 brain imaging scans. Optional procedures include a lumbar puncture and catheter placement in the spine two times. After completing the study, participants receive short-term follow-up care at the NIH while transitioning back to a provider.
The study is conducted at theNIH Clinical Center in Bethesda, Maryland and enrolls eligible participants from across the USA. Travel arrangements are provided and costs are covered by NIMH (arrangements vary by distance). There is no cost to participate and compensation is provided.
To find out if you qualify,  send an email to [email protected] ,
 or call 1-877-646-3644 (1-877-MIND-NIH [TTY: 1-866-411-1010].

Save the Dates

DECEMBER 3-5: Better Outcomes at the Intersection of Mental Health and Criminal Justice Conference. The Institute for Behavioral Healthcare Improvement (IBHI) is hosting a national conference December 3 - 5 in Miami, Fla. With support from the Mental Health Foundation, the conference will showcase the remarkable progress that can be achieved when community leaders, public safety officials and other stakeholders work together to better coordinate efforts and integrate programs to  improve outcomes for people with behavioral health treatment needs. Full agenda  and registration at 

DECEMBER 12-The Brain and Behaviroral Research Foundation hosts their free monthly Q&A webinar series: Robert Lowell: Courage, Genius, and Bipolar Disorder
Presented by: Kay Redfield Jamison, Ph.D. Johns Hopkins University School of Medicine / Johns Hopkins Hospital, The Dalio Family Professor in Mood Disorders, Professor of Psychiatry, 2010 NARSAD Productive Lives Award
Moderated by: Jeffrey Borenstein, M.D.

2:00pm-3:00pm EST
Robert Lowell, one of the greatest of American poets, had particularly devastating bipolar disorder. The webinar will discuss his illness and its relationship to his genius, as well as the role Lowell's enormous discipline and courage played in his life and writing.
Join by phone or on the web:

Signature Programs

NOVEMBER 1-NAMI-NYC Metro Basics. Wednesdays, November 1st-December 6, 6:00 pm- 8:30 pm at 505 8th Avenue, Suite 1103, New York, NY 10018.  To register contact Deniece Chi (212)684-3365 x 203 / [email protected].

NOVEMBER 2-NAMI NYC Metro Basics. Thursdays, November 2nd - December 7th, 10:00 am-12:30 pm at 505 8th Avenue, Suite 1103, New York, NY 10018.  To register contact Deniece Chi at (212) 684-3365 x 203 / [email protected]. 

NOVEMBER 3-NAMI-NYC Metro Basics (SPANISH SPEAKING) Fridays, November 3rd - December 8th, 10:00 am-12:30 pm at 505 8th Avenue, Suite 1103, New York, NY 10018.  To register contact Deniece Chi at (212) 684-3365 x 203 / [email protected]. 


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