PA, CUMBERLAND and PERRY COUNTIES NEWS P. 1 - Family to Family Promo P. 2 - Program schedules and Board roster P. 3 - NAMI Annual convenon and MHFA informaon P. 4 - NAMI Connecons noce; Membership promo and solici- taon for leaders; Sympathies for Monica Sjoberg P. 5 - Response to Robin Williams’ death P. 6 - Treatment for Depression P.7- Arcles about MAWD survival and value of posive thinking P.8—9 Bonus pages for email recipients Aug 18th—Dauphin Cty Support Mtg Aug 21st—Carlisle and New Cumberl and Support Mtgs Aug 24th—NAMI Connecons Mtg Aug 26/27—Mental Health First Aid Sept 3—6—NAMI Naonal Annual Convenon in Wash.DC Sept 4th—West Shore Support Mtg Sept 10th—Family to Family starts Sept 14th—NAMI Connecons Mtg Sept 18th—Carlisle and New Cum berland Support Mtgs AUGUST MEETING NAMI PA of CUMBERLAND and PERRY COUNTIES THURSDAY, AUGUST 21, 2014 at S.T.A.R. 253 Penrose Place, Carlisle, Pa. [See page 4 for direcons] 7:00 —8:30 PM Support Meeng P.O. Box 527 Carlisle, PA 17013 http://www.namipacp.org [email protected]Message line number: 240-8715 NAMI PA C/P will again offer the high- ly acclaimed Family to Family Educa- on program starng Wednesday, September 10th at the Carlisle YWCA at 301 G Street, Carlisle. This educa- on is for family members and those with loved ones who have a serious mental illness. Those who have taken this 12 week course in the past have aested to the value of the course with very powerful and posive tesmonials. The course is FREE, but registraon is required. Call or email Ann at 249- 6318 or [email protected]. The course will give you valuable in- formaon about mental illness, treat- ments, the treatment system, and coping strategies. The members of the class will become supports for each other during the class, in in many instances, thereaſter. Duplicaon and distribuon of this Newsleer is made possible by the MH/IDD Board of Cumberland/Perry Counes Inside this issue: DON’T MISS THE FAMILY TO FAMILY COURSE STARTING SEPTEMBER 10TH NAMI is the largest naonwide, grassroots membership organizaon devoted to improving the lives of those affected, directly and indirectly, by serious mental illness. NAMI is comprised of family members, friends and consumers. Volume XVII, Issue 8 August 2014 Calendar: Contact Us: 1
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PA, CUMBERLAND and
PERRY COUNTIES NEWS
P. 1 - Family to Family Promo P. 2 - Program schedules and Board
roster P. 3 - NAMI Annual convention and
MHFA information P. 4 - NAMI Connections notice;
Membership promo and solici-tation for leaders; Sympathies for Monica Sjoberg
P. 5 - Response to Robin Williams’ death
P. 6 - Treatment for Depression P.7- Articles about MAWD survival
and value of positive thinking P.8—9 Bonus pages for email recipients
Aug 18th—Dauphin Cty Support Mtg
Aug 21st—Carlisle and New Cumberl
and Support Mtgs
Aug 24th—NAMI Connections Mtg
Aug 26/27—Mental Health First Aid
Sept 3—6—NAMI National Annual
Convention in Wash.DC
Sept 4th—West Shore Support Mtg
Sept 10th—Family to Family starts
Sept 14th—NAMI Connections Mtg
Sept 18th—Carlisle and New Cum
berland Support Mtgs AUGUST MEETING
NAMI PA of CUMBERLAND and PERRY COUNTIES
THURSDAY, AUGUST 21, 2014 at S.T.A.R.
253 Penrose Place, Carlisle, Pa. [See page 4 for directions]
NAMI PA C/P will again offer the high-ly acclaimed Family to Family Educa-tion program starting Wednesday, September 10th at the Carlisle YWCA at 301 G Street, Carlisle. This educa-tion is for family members and those with loved ones who have a serious mental illness.
Those who have taken this 12 week course in the past have attested to the value of the course with very powerful and positive testimonials.
The course is FREE, but registration is required. Call or email Ann at 249-6318 or [email protected].
The course will give you valuable in-formation about mental illness, treat-ments, the treatment system, and coping strategies. The members of the class will become supports for each other during the class, in in many instances, thereafter.
Duplication and distribution of this Newsletter is made possible by the MH/IDD Board of Cumberland/Perry Counties
Inside this issue: DON’T MISS THE FAMILY TO FAMILY COURSE
STARTING SEPTEMBER 10TH
NAMI is the largest nationwide, grassroots membership organization devoted to improving the lives of those affected, directly and indirectly, by serious mental illness. NAMI is comprised of family members, friends and consumers.
What: Support Group Meeting When: Meets 3rd Thursday of each month Location: STAR (253 Penrose Place Carlisle, PA 17013) Time: 7:00 pm up to 9:00 pm there will be an educational pro-
gram once each quarter [every 3 months]. Where there is an education pro-gram it shall run from 7:00 PM until 7:50 PM, and the support meeting shall follow at 8:00 PM.
Aug 21, 2014 7:00 PM Announcements
7:15 up to 8:30 PM—Support Meeting
Sept 18, 2014
7:00 PM Announcements
7:15 up to 8:30 PM—Support Meeting
Oct 16, 2014
7:00 PM Announcements
7:15 up to 8:30 PM—Support Meeting
WEST SHORE SUPPORT GROUP
Meets at 6:30 PM on the 1st Thursday of each month at St. Timothy’s Lutheran
Church, 4200 Carlisle Pike, Camp Hill, PA. There may be an occasional education
program. Call Thom at 697-2602 for information.
Sept 4, 2014 6:30 to 8:00 PM—Support Meeting
support
NEW CUMBERLAND SUPPORT GROUP [from York County F2F Class
Meets at 6:30 on the third Thursday of the month at the New Life Baptist Church,
530 Big Springs Road, New Cumberland, PA. Contact Beverly Riggins at 717-979-
0519 for more information.
Aug. 21, 2014
6:30 to 8:00 PM—Support Meeting
DAUPHIN COUNTY SUPPORT GROUP [Assoc with NAMI PA Dauphin County]
Meets at 7:00 on the 3rd Monday of each month at the Epiphany Lutheran Church
at 1100 Colonial Rd., Harrisburg, PA. Contact Marge Chapman at 574-0055 for more
information.
Aug 18, 2014
6:30 to 8:00 PM—Support Meeting
2
3
Top-notch researchers and clinicians provide in-
formation and tools to advance and sustain recovery from mental illness.
Be a voice for your community and meet with
your legislators during advocacy visits on Capitol Hill.
Important perspectives on recovery presented by
people living with mental illness and their families.
Strategies and tactics to effectively advocate for
changing the mental health system from the country’s keenest minds and savviest policymakers.
Networking opportunities enable us to learn from
each other about how to improve the lives of all peo-ple living with mental illness.
Full Registration Rates (includes dinner ticket)
Member Non-Member Deadline
$250 $350 After 8/1/14
Consumer $160 $220 After 8/1/14
Day Registration Rates
(does NOT include Dinner Ticket)
Member Non-Member Deadline
Day rate $100 $125 N/A
Consumer $60 $75 N/A
Contact NAMI
3803 N. Fairfax Dr., Suite 100, Arlington, Va 22203 Main: (703) 524-7600, Fax: (703) 524-9094
Member Services: (888) 999-6264
Helpline: (800) 950-6264
Lodging & Travel
Convention Headquarters Hotel:
Washington Marriott Wardman Park Hotel
2660 Woodley Road, N.W., Washington, DC 20008
NAMI has a negotiated rate of $155/night plus tax for sin-
Membership includes membership in NAMI [national] and NAMI PA,
and Subscriptions to The Advocate, The Alliance, and NAMI PA C/P
News.
$35.00 For a Family
Same price as an individual. A family consists of two people living at the same address. A family has one vote, and will receive one copy of subscriptions.
$3 - $35.00 For “Open Door” membership
Anybody can opt to join as an open door member. Dues are any amount that can be afforded. This option is available so that membership is not denied due to financial hardship. Open door members are regular members with all the privileges and powers of membership including all subscriptions. $50.00 For Professional Membership A Professional member shows support for the mission and goals of the organization. Upon request, NAMI PA C/P will provide multiple copies of our newsletter for the waiting room of Professional Members.
Make Payment to: NAMI PA C/P
Send Payment to: NAMI PA C/P Box 527, Carlisle, Pa 17013
JOIN NOW TO BECOME PART OF
THE NAMI FAMILY
Memberships submitted now will extend to the end of 2014
“I’ve been there, I understand.”
Connections is meeting at new day and time!! NAMI Connection is a recovery self help sup-port group for people living with mental illness. WHEN: 2nd and 4th Sunday each month at 2:00 PM WHERE: Aurora Cyber Café 104 West Main Street, Downtown Mechanicsburg, PA 17050 (717) 591-9598 (across from Jo Jo's Pizza) WHO: Jen and Chris, NAMI National trained Support Facilitators CONTACT: Any group related questions can be directed to Jennifer at (717)385-8028.
ACTIVISTS AND LEADERS
WANTED
BY NAMI PA C/P
In anticipation of elections in the Fall, and the need to replace retir-
ing members of the NAMI PA C/P Board of Directors, we seek to
identify individuals who are interested in serving on our NAMI PA C/
P Board of Directors either as a Director at large, or as an officer.
If you have questions, do not hesitate to contact any of the current
officers or Directors listed on page 2 to discuss.
If you are interested, please send a note or email expressing your
interest and outlining your experience relevant to the desired posi-
tion to P.O. Box 527, Carlisle, PA 17013, or by email to :
MEDICAL ASSISTANCE FOR WORKERS WITH DISABILITIES (MAWD) PROGRAM SAVED
Department of Public Welfare (DPW) Secretary Beverly
Mackereth announced today that DPW has shelved the
planned elimination of the Medical Assistance for Workers with
Disabilities (MAWD) program. The program was scheduled to
end effective January 1, 2015.
PMHCA advocated to maintain
MAWD, within our comments
against establishment of Healthy
PA. PMHCA encourages the PA
Department of Public Welfare to
expand Medicaid now.
MAWD provides health coverage
to over 34,000 working Pennsyl-
vanians with disabilities who don't qualify for other categories
of Medical Assistance, usually due to their earnings. It provides
an important incentive for people with disabilities to work and
still keep their Medical Assistance coverage. It allows individu-
als with disabilities to work without fear of losing their critically
important health insurance coverage, including personal assis-
tance services and other supports they need to get and keep a
job and remain in the community.
The Pennsylvania Health Law Project worked closely with nu-
merous disability organizations and individuals on MAWD to
highlight how eliminating this program would have a devas-
tating effect. Their advocacy efforts included drafting and coor-
dinating comments to state and federal officials by many disa-
bility organizations and the Consumer Subcommittee of the
Medical Assistance Advisory Committee, assisting affected indi-
viduals in drafting their own comments, and providing infor-
mation to stakeholders.
PMHCA applauds the decision by Secretary Mackereth and the
Corbett Administration to continue the MAWD program.
MAWD provides vital health coverage and community supports
for working Pennsylvanians with disabilities.
7
People who have mood disorders are on the receiving end of a
lot of negative energy in their lives. Things like criticism, disa-
greement, discord, faultfinding, judgment and nitpicking are
seldom strangers to someone who has depression or bipolar.
Sometimes the negative feedback comes directly from the per-
son themself. All too often they are their own worst critic, and
this steady stream of negative feedback can make problems
even worse:
It deepens discouragement that may trigger additional stress.
It usually adds to a loved one’s shame, guilt and already low self-esteem.
It makes difficult situations even more difficult.
It can cause a loved one to lose hope, give up and adopt a “what’s the use?” mentality.
It may eventually lead to suicide ideation, or even worse.
Something they don’t often get enough of is understanding
and compassion, and this is so unfortunate. When we as com-
panions, family members or caregivers are able to provide com-
passionate understanding of our loved one’s behavior, however
irrational or inappropriate that behavior may be, we have the
potential of gaining the following:
Greater insight of what our loved one is dealing with and how their illness is interfering with their ability to make healthy choices.
Identifying and prioritizing our loved one’s needs (medical care, therapy, support groups, nutrition, stress reduction, shel-ter, etc.)
Discovering and implementing recovery tools that help mo-tivate our loved one toward achieving managed stability.
Establishing mutually agreed upon realistic goals (“small steps”) and avoiding pressurized unrealistic goals (“huge steps”), and then achieving those goals.
When our loved one uses poor judgment or makes an un-
helpful or unhealthy choice, our choice should be to stay posi-
tive and remember that they may be doing the very best they
can at the moment. Through compassionate understanding we
and our loved one can continue to move in the direction of sta-
bility, regardless of how small the steps we are able to manage
at the time.
Choosing positive directions is vital to recovery. Let’s try to
always choose wisely
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 differ-
ent. 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 cre-
ates 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 condi-
tions 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 protec-
tive elements like love and holding or risks like viruses at cer-
tain stages of neurodevelopment or traumatic experiences. It’s
important to think both and not either-or when thinking of psy-
chiatric 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 for-
ward in basic functional understanding, but isn’t a clinically use-
ful 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 break-
through is optogenetics, which is the ability to impact specific
cells through light and modified proteins. These are not yet clini-
cally 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 cau-
tioning 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
A GROUNDBREAKING COMMITMENT TO PSYCHIATRIC RESEARCH By Ken Duckworth, M.D., NAMI Medical Director
Today I was fortu-nate to be on a panel to discuss the find-ings of a major piece of work published in Nature and the un-precedented $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 ac-tion 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 innova-tion 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 scien-tists 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 peo-ple living with schizophrenia and compared their genes to peo-ple 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 philoso-phy. This means that all the data sets will be shared with re-searchers from across the world. This approach will clearly ad-vance 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 re-ducing 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 theo-retical 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 symp-toms 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 cul-ture change and this line of inquiry will hopefully yield similar results in our field.
Ask the Doctor: Teleconference Series NAMI's Ask the Doctor teleconference is a monthly series hosted by NAMI's Medical Director, Dr. Ken Duckworth. Typically, he is joined by another mental health professional or advocate who in turn presents on a topic in his or her area of expertise. Each month, two such calls are hosted; one focuses on adult issues, the other on child and adolescent issues.
To access these calls, dial 1 (888) 858-6021 and enter pass code 309918#. These calls are always held at 11 a.m. E.T. on scheduled dates unless otherwise noted. The Ask the Doctor schedule and previously recorded podcasts can be found below. Upcoming Ask the Doctor Schedule
Calls on adult issues
August 22, 2014: Dr. John Oldham; Borderline Personality Disorder
Calls on child, adolescent and young adult issues August 2014: TBD September 2014: Dr. Stuart Ablon; Think:Kids