June 2013
Survey for People with a Genetic Condition
The Genetic Alliance is disseminating a survey to people with genetic conditions and their families and anyone else who may be eligible and interested in participating. To be eligible, respondents must have been told by a doctor or other health care provider that they (or their child) have a genetic condition.
Genetic Alliance, in collaboration with the American College of Medical Genetics (ACMG) and the Health Resources Services Administration (HRSA), is conducting this survey to assess how individuals with genetic conditions access health care and support. The data will be very helpful in painting a picture of health care experiences of individuals with genetic conditions and their families, and will provide direction for future programmatic efforts with the goal of improving access and health.
We ask that you share this message and the survey link below and request that individuals complete the survey by Thursday, June 6, 2013.
https://www.surveymonkey.com/s/SurveyAccesstoCare
If you have any questions about the survey or use of the data, please contact Sharon Romelczyk, Program Manager at sromelczyk@geneticalliance.org. This project has been approved by Genetic Alliance’s Institutional Review Board (IRB) to protect all survey respondents and ensure that all responses will be kept confidential. Due June 6, 2013
May 2013
NTAP Plexiform Neurofibroma Funding Announcement
The Neurofibromatosis Therapeutic Acceleration Program (NTAP) is a privately funded research program housed within Johns Hopkins that is working to advance therapies for people living with neurofibromatosis 1 (NF1) associated plexiform neurofibromas.
Please visit our web site at www.n-tap.org to learn more about the program.
NTAP is currently accepting unsolicited applications for any research project related to the development of therapeutics for plexiform neurofibromas. Unsolicited applications are reviewed on a rolling basis, but at least quarterly.
Applications will be registered and prepared for review at the close of the current quarter (June 30, 2013).
If you are considering a study that relates to the therapeutic pipeline for plexiform neurofibromas (preclinical or clinical work), please consider applying. Instructions for submitting an application can be found here (www.n-tap.org/Research_Op.html) and you can contact NTAP with any questions at info@n-tap.org.
Tammi Rupp
Program Coordinator/Financial Analyst
Neurofibromatosis Therapeutic Acceleration Program
600 Wolfe Street, Meyer 100
Baltimore, MD 21287
Phone: 410-955-6827
Fax: 410-614-0845
Email: trupp1@jhmi.edu
Web: www.n-tap.org
March 2013
NTAP Announces new NF Research Funding
The Neurofibromatosis Therapeutic Acceleration Program (NTAP, www.n-tap.org) is announcing a Request for Applications regarding the development and validation of Patient Reported Outcome (PRO) measurement tools for use in the NF1 plexiform neurofibroma community.
We sincerely request, if practicable, that your organization link the RFA announcement to your website and forward to interested researchers and colleagues.
We would also appreciate your feedback regarding your ability to post and share the RFA.
Please Contact Tammi Rupp, NTAP, Program Coordinator at (410) 955- NTAP – trupp1@jhmi.edu with questions regarding the RFA.
Link to Website is: http://www.n-tap.org/Research_Op.html
February 2013
ALERT! CONTACT YOUR CONGRESSIONAL LEADER NOW!
THE SEQUESTER MAY DEEM NF RESEARCH FOR A CURE "NON-ESSENTIAL"!!!! CONTACT THE PRESIDENT AND YOUR CONGRESSIONAL LEADER NOW AND TELL THEM WE MATTER!
To find out who represents you: http://www.congress.org/congressorg/directory/leadership_list.tt
February 2013
Give us a jingle!
We're available! "Skype" us at: NF World
February 2013
IMPORTANT--EARLY SIGNS OF LEARNING AND ATTENTION VULNERABILITY IN NF-1 MOVED TO NEW DATE
Due to a scheduling conflict, "Early Signs of Learning and Attention Vulnerability in NF-1" will be presented live on APRIL 3, 2013 AT 11:00 A.M.
REGISTER AT: https://www4.gotomeeting.com/register/819411047
January 2013
Thanks to NF Friends Jim and Judy Daniel for their monthly sponsorship
January 2013
WE'RE MOVING: FEBRUARY 1, 2013
Effective February 1, 2013 our new address is: Suite 213, 2 Village Square, 5100 Falls Rd., Baltimore, MD 21210. The phone number is: (443)423-0535
January 2013
Welcome New Board Member Steve Lorberbaum!
NF Mid-Atlantic welcomes new board member Steve Lorberbaum!
Steve is a senior operations consultant and attorney and has served as chief operating officer and general counsel of real estate investment and development, specialty finance and software integration companies, including MCM Capital, an investor in residential mortgage loans, Western Development, a nationwide retail developer, Seneca One Finance, a specialty finance provider, and Peak Technologies, a multinational system integrator. Steve holds a Bachelor of Science in Industrial Engineering from Northwestern University and a Juris Doctor degree from George Washington University.
We're thrilled to have Steve's energy and experience!
January 2013
IMPORTANT-PHONE DOWN
THE NF MID-ATLANTIC OFFICE IS EXPERIENCING PROBLEMS WITH OUR MAIL SERVICE AND OUR PHONE SYSTEM. WE'RE VERY SORRY. PLEASE BEAR WITH US WHILE WE RECTIFY THIS SITUATION. IN THE MEANTIME WE HAVE EMAIL SERVICE AT: info@nfmidatlantic.org
Our apologies
January 2013
Zach Turner. 1990 to 2012
We mourn the loss of a brave young man, Zach Turner, who died on Christmas Eve 2012. Zach combated NF his entire life and achieved greatness through his spirit, love, and affection. Our collective heart goes out to the Turner family. A fund in Zach's name is being set up at NF Mid-Atlantic.
To view a recent photo of Zach and his Parents, click: http://www.nfmidatlantic.org/index.cfm?page=photo-gallery&id=72157632420795177&user_id=45686160@N07
December 2012
Yes, we're closed for the week...BUT
You can still contribute and have a tax deductible donation. Send a check to: 3600 Clipper Mill Rd., Suite 240, Baltimore MD 21211, or click the "Donate Now" button. Thank you!
December 2012
Happy Holidays from NF Mid-Atlantic
See your friends! http://www.nfmidatlantic.org/index.cfm?page=videos
December 2012
Just Added: View Dr. Couvadelli's Slides
View the presentation: Neuropsychological Testing in Neurofibromatosis. Download the slides. View the video. Visit Dr. Couvadelli's site at
http://neuro-behavioral.ning.com/
December 2012
Study Identifies Targeted Molecular Therapy for Untreatable NF1 Tumors
Download article here.
December 2012
Executive Director Barbra Levin "Talking Good"
Check out this month's "Talking Good" which profiles NF Mid-Atlantic's Executive Director Barbra Levin:
http://www.communicategood.com/2012/12/talking-good-with-barbra-levin/
November 2012
Thank you!
Thanks to everyone for a fabulous event: "A Night in Florence"! Photos will be posted soon!
November 2012
SILENT AUCTION ITEMS ANNOUNCED
CHECK OUT THE SILENT AUCTION ITEMS AVAILABLE AT "A Night in Florence" event on November 11, 2012 in Baltimore. If you want to make a bid, you may contact us by email at: info@nfmidatlantic.org. It will be considered.
Clike here to download Silent Auction Items.pdf
October 2012
Breast Cancer and NF Study Begins
Participants wanted. Download details
Clike here to download Breast Cancer NF Study.pdf
October 2012
NTAP Announces RFP
Funding Opportunity
A Request for Applications (RFA) has been issued by the Neurofibromatosis Therapeutic Acceleration Program that is intended to support the development of novel cell culture model systems for neurofibromatosis type 1 (NF1)-associated plexiform neurofibromas. Successful proposals will focus on the development of innovative cellular model systems that address the challenges typically encountered in developing disease relevant cellular models including: early senescence of nonmalignant cells, limited genotypic, phenotypic and functional characterization (at the DNA, RNA, protein, and functional levels), disease relevance, stability and reproducibility, and failure to represent the complexity of human tumors in their multi-cell type composition, interactions with the microenvironment and the biological diversity. Human cell cultures and non-human cell cultures that model human tumors will be considered. The deadline for submission of proposals is 12:00p (noon) Eastern Standard Time on November 9, 2012. For more information, please visit www.n-tap.org and view the “Solicited Research Proposals” section.
http://www.n-tap.org/Research_Op.html#section1
September 2012
Two New Webinars Released
Watch "Help With You Obsessive Compulsive Disorder" and "Genetic Testing Through a Lifetime" both from NF Mid-Atlantic
August 2012
Fall Webinar Schedule Announced
Join NF Mid-Atlantic for 3 new, FREE webinars, September 12, September 28, and October 23, 2012! DOWNLOAD THE SCHEDULE HERE!
July 2012
Do you "Think NF"?
We want everyone to Think NF. Why? Because the more people ask: "what's NF?" the more people will realize that this a NOT rare, this is NOT remote, and Neurofibromatosis deserves a cure and consideration! Check out our new tag logo. You can wear a t-shirt, wristband, or hat too!
July 2012
Young Peoples’ and Parents’ Experiences of NF1
Research Announcement:
Do you have NF1 and are you aged 14-24? or Do you have a child with NF1 who is 14-24?
Would you be willing to complete a short survey about your experience?
We want to hear about your experience of NF1. Please take part in this brief online survey to share your views.
As a thank you for taking part in this study you can choose to be entered into a draw to win one of 2 shopping vouchers.
For more information and to access the online survey please use one of the following links:
www.tinyurl.com/NF1parents
www.tinyurl.com/NF1yp
June 2012
THANK YOU TEAM!!!!
Wish you had been there! Great team! Great supporters! Great race! Beautiful day!!! Start your own team! Ask us how! teamnf@nfmidatlantic.org
June 2012
10% to goal!!!!!
We're almost there! And still taking donations! Please help the team!!!! http://www.active.com/donate/teamnf2012
May 2012
SIGN UP FOR THE RACE: WALK/RUN/MEANDER FOR NF
DO IT NOW!!! DON'T MISS THIS:
email us at: teamnf@nfmidatlantic.org and we'll do the rest!
EASY-PEASY!!
May 2012
WE'RE HALF WAY THERE!!! PLEASE DONATE!
SUPPORT YOUR TEAM NFers! It's easy!
http://www.active.com/donate/teamnf2012
May 2012
View: "Los fundamentos de la Neurofibromatosis" (IN SPANISH)
Now available in our video section: view here
May 2012
PARTNER of the Month: The E.C. Wareheim Foundation
Thank you for their very generous donation! We couldn't do it without you!!!
May 2012
BREAKING NEWS: NF-2 drug approved in Europe
Arno gains orphan-drug status for AR-42 in Europe
Arno Therapeutics has received orphan-drug designation for AR-42 to treat neurofibromatosis type 2 (NF2) in the Europe.
AR-42 is a broad-spectrum deacetylation inhibitor of both histone and non-histone proteins.
The orally available inhibitor has demonstrated greater potency and activity in solid tumours and hematological malignancies when compared in preclinical studies to vorinostat.
Arno chief executive officer and president Glenn Mattes said, "The EMA's orphan-drug designation represents another important step in our development program for AR-42 that will help us pursue its clinical development for the treatment in this rare and debilitating disease."
AR-42 is currently being studied in a Phase I/IIa trial with relapsed or refractory hematologic malignancies patients and solid tumour patients.
NF2 is a genetic disorder characterized by the growth of noncancerous tumours in the brain and spinal cord, juvenile cataracts and neurofibromas of the skin.
May 2012
TIME TO JOIN THE TEAM!!
CLICK HERE FOR INFORMATION AND REGISTRATION
May 2012
The Basics of Neurofibromatosis-Slides
The slides for The Basics of Neurofibromatosis Webinar presented by Dr. Maria Acosta on May 2, 2012 are now available for download
Read full article
April 2012
PARTNER of the Month: The Friedman Foundation
Thank you for your recent donation!
April 2012
Listen to Executive Functioning: How to Stay Organized in a Confusing World
LISTEN
April 2012
Wonderful Educational Seminar on Executive Functioning
Thank you Sarah Ottensoser!
Download the slides!
Clike here to download Executive Functioning - how to stay organized in a confusing world.pdf
April 2012
NOW AVAILABLE: "Executive Functioning" seminar slides
Clike here to download Executive Functioning - how to stay organized in a confusing world.pdf
April 2012
April/May/June 2012 Calendar Avail for Download
Don't miss a single event. Download our calendar NOW!
Clike here to download Calendar. April May June 2012.pdf
April 2012
TEAM NF REGISTRATION OPENS
Join the Team, Join the FUN! Register now for the 6/10/12 race along Baltimore's Harbor to raise awareness and funds for NF Mid-Atlantic
Download the form here or go to http://www.active.com/running/baltimore-md/survivor-harbor-7-and-pva-wheelchair-championship-2012
March 2012
Thank you Kristi Hopkins!!!
NF Mid-Atlantic thanks Kristi Hopkins for a great bookclub event.
To buy Thriving With Neurofibromatosis click here
March 2012
May is NF Awareness Month...AND
It's vehicle donation month...donate your used vehicle to benefit
NF Mid-Atlantic at: http://www.cardonationwizard.com/charities/v-dac/donate1.jsp?affilID=222580179&affilName=Neurofibromatosis,%252520Inc.%252520Mid-Atlantic
March 2012
Go OUT by Staying IN
The support team at NF Mid-Atlantic has announced some exciting additions to our meet-up programs. Besides our LIVE CHATs, we are commencing the NF Mid-Atlantic Book Clubs. Register for the first one on March 28th at 8 pm Eastern http://nfmidatlanticbookclub.eventbrite.com/
February 2012
LIVE CHAT WITH THE NF MID-ATLANTIC LEADERSHIP
Join the Discussion at: www.nfmidatlanticsupport.com
7:00 p.m. to 8:00 p.m. (Eastern Standard Time)
Everyone is welcome but you must register (free) at the support forum to join
February 2012
NF Mid-Atlantic hits the $20,000 mark in Anniversary Donations
Our 33rd Anniversary has brought out the most generous in all of you. We reached $20,000 today in our goal of $33 for 33 years in 33 weeks! There's still time to make a donation:
https://www.givedirect.org/give/givefrm.asp?Action=GC&CID=1477
Read full article
February 2012
Camp New Friends 2012 Brochure Now Available
Download Here:
http://www.nfmidatlantic.org/uploads/downloads/Camp%20NF_2012.pdf
February 2012
SSA releases: "Extra Help With Medicare Prescription Drug Plan Costs
Complete Social Security's Application for Extra Help with Medicare Prescription Drug Plan Costs (SSA-1020). Here's how:
Apply online at www.socialsecurity.gov/extrahelp;
Call Social Security at 1-800-772-1213 (TTY 1-800-325-0778) to apply over the phone or request an application; or
Apply at your local Social Security office.
How Can I Get More Information?
For more information about getting Extra Help with your Medicare prescription drug costs, visit www.socialsecurity.gov/extrahelp or call Social Security at 1-800-772-1213 (TTY 1-800-325-0778). Social Security representatives are available to help you complete your application. The sooner you apply the sooner you can begin receiving benefits.
Read full article
December 2011
Dr. Andrew T. Putnam Receives 2011 “Make A Difference Award”
Herein is Diana Baldwin's Nomination Letter for Dr. Putnam:
Dear NF Mid-Atlantic;
My son had a benign PNST (Plexiform Nerve Sheath Tumor) removed from his spine last February and then had his spine fused due to severe scoliosis six weeks later in April at Georgetown University Hospital in Washington, D.C. There were many outstanding doctors who participated in my son's care but the one who stands out the most is Dr. Andrew Putnam. Dr. Putnam is the head of the Palliative Medicine Program at GUH. My son is very resistant to pain medications and it was difficult to come up with the right combination to control his pain and make him comfortable. Dr. Putnam managed my son's pain from day one and he has made himself available via email if I have any questions, day or night or on the weekends. He stops by to see my son face to face whenever we come to GUH for an appointment. He even came on his day off while my son was in ICU recovering from the spinal fusion to assess his pain and make recommendations to the doctors.
He still responds right away if I email him for a refill or have any questions about my son's medications even six months later. He is my son's hero and he has made a huge difference in our lives by making the two surgeries easier to deal with by professionally and successfully managing my son's pain so that he can rest and heal properly.
Dr. Putnam's contact information is:
Andrew T. Putnam, M.D.
Lombardi Cancer Center
Medstar - Georgetown University Hospital
3800 Reservoir Rd., N. W.
Washington, D. C. 20007-2113
202-444-2198
Thank you for your kind consideration of this very special doctor for your Make a Difference Nomination.
Diana L. Baldwin
December 2011
Add to our NF 2012 New Year's Resolutions
Go to our Facebook event and add to our list of New Year's Resolutions. We've started you out:
See what others want: http://www.facebook.com/events/138654452915504/
Read full article
December 2011
JUST RELEASED
Guardianship And Its Alternatives: A Handbook on Maryland Law
Download here free
Read full article
December 2011
Listen to Executive Director Barbra Levin on Insight Radio
insight11272011.mp3
November 2011
Volunteers Needed for Research Study
A graduate student in the PhD program at Wurzweiler School of Social Work is recruiting volunteers for a research study. Participants must be parents who provided most of the care for a child who had a delayed diagnosis of more than six months’ duration after the symptoms were first noticed, and who was eventually diagnosed with a rare disorder (fewer than 200,000 persons in the United States have that disorder). At this time we are not including instances of a child with ADD or austim spectrum disorders or any birth injuries, or who is not living at home, and we are not able to include those families whose child is deceased. Participants will have a telephone interview of approximately one and a half hours, and will complete a questionnaire online of 55 questions. The interview questions ask about your response to the time of searching for a diagnosis, and your response to obtaining a diagnosis. The questions online simply require one check for each answer. There is no financial compensation for participation. The risk to participation is an emotional reaction to remembering and talking about your experiences. The benefits include the knowledge that you are making a contribution to those who face these experiences in the future. Results of the study will help professionals to provide better care to families facing these difficult experiences. If you are interested, please contact Rachel Reeder, MSW, MSN, CNM at 973-641-8957 or rachelcnm@aol.com. Thank you.
November 2011
Executive Director to Speak on NF
Executive Director Barbra Levin will speak about NF Mid-Atlantic and NF Awareness on Sunday, November 27, 2011 at 7:00 p.m.
Listen Live at:
http://insightondisability.com/ or
http://tunein.com/radio/Insight-on-Disability-p327931/
If you're in the Baltimore area, listen to 680 AM Talk Radio
An archive of this program will be available later and on our website
Read full article
November 2011
In Memoriam -Reba Nussbaum
NF Mid-Atlantic mourns the passing of Reba Nussbaum who passed away November 27, 2011.
Reba was a devoted supporter of our efforts, particularly after her Grandson Max was diagnosed with NF-1.
Reba's daughter Diane Nussbaum Bark is the in-coming President of the Board of NF Mid-Atlantic.
In lieu of flowers donations in Reba's name will be accepted by NF Mid-Atlantic.
We will miss Reba and our collective heart goes out to her loving family.
November 2011
Beverly Dobson Given the NF Mid-Atlantic Leadership Award at this year's Italian Night
Former Board President, and current Advisory Board member, Beverly Dobson was honored at this year's 12 Annual Italian Night.
Below is a copy of Executive Director Barbra Levin's remarks:
When Beverly Dobson was born in 1946 to an old and extended Baltimore family, she had no idea what her life’s mission would become. It was not until 1968 when she married her beloved John, who had Neurofibromatosis, that it became clearer. Four years later a daughter, Karen, arrived—adopted from Korea. A year later David was born—he was a junior—sharing his Father’s name and genetic disorder. Baby Megan arrived in 1981—also from Korea, and also with NF. And 2 years later baby boy Rick—similarly from Korea, and similarly with Neurofibromatosis. A perfect family: girl, boy, girl, boy and 2 loving parents. What kept this out of the realm of “average” is that in this perfect family, 4 of the 6 of them had an unpredictable and incurable disease.
In 1979 both John and Bev became active with the fledgling Neurofibromatosis, Mid-Atlantic. Over the years both held a variety of positions on the Board.
In 2001 John died—young and tragically—a victim of NF. A devastated and heartbroken family moved on and, less than a year later, Bev took over the helm as President of NF Mid-Atlantic.
In the 9 years that ensued, Bev has overseen too many advances and changes to recount. The highlights are the association with Camp New Friends; the hiring of an Executive Director; the relocation of headquarters to Baltimore, and sweeping updates to image and a gateway into the electronic age and social media to raise awareness about NF. Bev’s final legacy was the passage of progressive new bylaws that has ushered in a new professional board.
On behalf of that Executive Director, and that new board, and in the presence of your wonderful family and your adored “Italian Night”, we have a small token for you, accompanied with our appreciation, and our shared wish that NF Mid-Atlantic continues to thrive.
October 2011
HOT OFF THE PRESS
Beverly Dobson has submitted the President's Report in advance of our Annual Meeting.
It is below. Thank you Bev!
2011 President’s Report
NF Mid-Atlantic has just completed our first full financial year at our new address. Our efficient Executive Director, Barbra Levin is still our only paid employee. We are still trying to save money as donations and fundraising are still down. We are making fuller use of the internet and the resources that accompany our office space to save and inform our members and others.
Our mailings and newsletters have slackened off, but our internet presence is still greater and growing. We have been able to hold several informational meetings in the conference areas available to our office. In March we entered into a partnership with “We Work For Health” that has already been beneficial.
Once again we have exhibited, attended conferences, and been represented in much of our service area, including NJ, PA, MD,DC, and VA.
We helped CHMC of DC hold another year at Camp New Friends in Massanetta Springs, VA this July.
Our Survivor Harbor 7 Race in June was a big success.
2011’s Make a Difference Award went to Dr. Doug Stewart. Rick Dobson nominated him and presented the award to him at Italian Night Nov.13th. This year’s Italian Night is Nov. 12, 2011. Nominations for this year’s Make A Difference Award will not close until December.
Our Annual Appeal is in process, tied, this year to our 33rd Anniversary.
Earlier in the year our Board of Director’s voted to update our By-laws. As a result several of us will be leaving the Board. This will be my last President’s Report. In the 9 years I have been President of NF Mid-Atlantic, our devoted Board has presided over big changes. Among them the creation of Camp New Friends, the hiring of our Executive Director, the relocation of our office, the enlargement of our service area, and the redefining of our relationship with NF Inc./NF Network.
I have great faith that NF Mid Atlantic’s next Board and President will be able to take our organization even further, especially with the internet.
Thank you to all the members of NF Mid Atlantic’, especially those I’ve served with on our Board. It’s been an honor.
Beverly B Dobson
President, NF Mid-Atlantic
2002-2011
October 2011
Request for NF Surgery Candidates for The Learning Channel documentary series
Morningstar Entertainment, an Emmy Award-winning production company based in Los Angeles, CA are currently producing "McKinnon Files 2011," a series for The Learning Channel which follows a world-renowned physician and surgical team as they perform reconstructive surgery on patients suffering from large tumors such as Neurofibromatosis (benign enlarged tumors) and facial disfiguration/burns due to deformation or trauma. "McKinnon Files 2011” is a continuation of a medical series for The Learning Channel, an episode of which won a CINE GOLDEN EAGLE award for medical documentary programming.
As part of The Learning Channel series, this medical team has once again offered to donate their reconstructive surgical services to several individuals who are suffering from life-threatening tumors. Although hospital costs would have to be paid by the patient or other charitable organizations obtained by the patient, Morningstar has agreed to donate travel and lodging costs to these individuals.
Please let me know if you (or your contacts or media relations department) would be able to reach out to patients who might want to participate in this program. This is an incredible opportunity for patients who otherwise would not have access to one of the most esteemed doctors in this field, and a chance at a normal life.
In order for the medical team to assess if they can aid these individuals, prospective patients must sign appropriate HIPAA documents, send a description of their illness and pictures of the tumor.
if you have any questions or need additional information Contact
Sridhar Dasari, Researcher at (310)266-2589. sdasari@morningstarentertainment.com
October 2011
Board Dates 2012 Announced
The NF Mid-Atlantic Board of Directors will meet at the following times during 2012:
January 9, 2012 7PM to 8PM
April 9, 2012 7PM to 8PM
July 9, 2012 7PM to 8PM
October 8, 2012 7PM to 8PM
September 2011
Request for NF Surgery Candidates
Sridhar Dasari has been working out the details for another program being put together for the Learning Channel. They are looking to document an individual with a large plexiform or one causing disfigurement that once removed will dramatically improve the quality of life. They want to interview the person before surgery, during surgery and after. They have the medical team’s service donated and the travel and lodging, but hospital costs will still need to be paid.
Please see below from Sridhar Dasari:
I am a researcher at Morningstar Entertainment, an Emmy Award-winning production company based in Los Angeles, CA. We are currently producing "McKinnon Files 2011," a series for The Learning Channel which follows a world-renowned physician and surgical team as they perform reconstructive surgery on patients suffering from large tumors such as Neurofibromatosis (benign enlarged tumors) and facial disfiguration/burns due to deformation or trauma. "McKinnon Files 2011” is a continuation of a medical series for The Learning Channel, an episode of which won a CINE GOLDEN EAGLE award for medical documentary programming.
The surgical team whom we follow specializes in plastic surgery at Chicago's Saint Joseph Hospital, Children’s Memorial Hospital, and the University Of Chicago Medical Center. Morningstar's past programs have covered this medical team’s successful removal of a 300-pound tumor from a patient in an 18-hour operation, and the surgeon’s volunteer work in Romania with a team of 12 international doctors who removed a 167 pound tumor from a 47-year old woman during a 10-hour operation. These successful and unprecedented procedures drew worldwide attention and our programs gave hope to sufferers of these enlarged tumors worldwide.
As part of The Learning Channel series, this medical team has once again offered to donate their reconstructive surgical services to several individuals who are suffering from life-threatening tumors. Although hospital costs would have to be paid by the patient or other charitable organizations obtained by the patient, Morningstar has agreed to donate travel and lodging costs to these individuals.
Please let me know if you (or your contacts or media relations department) would be able to reach out to patients who might want to contact us and participate in this program. This is an incredible opportunity for patients who otherwise would not have access to one of the most esteemed doctors in this field, and a chance at a normal life.
In order for the medical team to assess if they can aid these individuals, we will ask prospective patients to sign appropriate HIPAA documents, send a description of their illness and pictures of the tumor.
Thank you for your consideration. Please do not hesitate to contact me if you have any questions or need additional information. You can reach me via email at sdasari@morningstarentertainment.com and/or sddoctv@hotmail.com or via cell phone at (310)266-2589.
September 2011
33 for 33 Birthday event!
September 2011
Caregiver Support Group now a Teleconference!
In deference to Caregivers everywhere, we have changed the Caregiver Support Group to a free teleconference.
Anyone, anywhere, may now join us by phone:
Sept. 18, from 2:00 to 4:00 p.m. (Eastern U.S.A. time)
Phone:
(209) 647-1000
Access code:503344#
Read full article
September 2011
Link between NF1 and Breast Cancer
From our affiliate in Michigan:
For the past several years researchers have suspected that there is a higher risk for breast cancer in individuals with NF1. This research has now come to Michigan. Dr. Xia Wang at Henry Ford Hospital is working on a grant from the Department of Defence to study breast cancer in NF1.
If you or a family member with NF1 has had breast cancer, regardless of how long ago, please consider contacting Dr. Wang to help her gather data. Simply email her at xwang1@hfhs.org. She'll send you all the information you need to decide whether you wish to participate.
You may also contact Dr. Wang by phone:
Xia Wang MD, PhD, FACMG
Department of Medical Genetics
Henry Ford Health System
3031 W. Grand Blvd., Ste. 700
Detroit, MI 48202
Tel (313) 916-3188
Fax (313) 916-1730
September 2011
Journal Submissions Accepted
Do you have NF? Do you write a journal?
NF Mid-Atlantic is accepting your public submissions for possible publication on our website.
email to:support@nfmidatlantic.org
September 2011
2011 Annual Appeal Starts!
Please Help.
Thank you!
August 2011
Study of RAD001 for Treatment of NF2-related Vestibular Schwannoma
This study is NOT currently recruiting volunteers. For more information:
http://www.clinicaltrials.gov/ct2/show/NCT01345136?term=nf2&rank=6
August 2011
"My Beautiful Friends"
NF Mid-Atlantic member Janet Miller told us of this wonderful series "My Beautiful Friends" currently being shown on the OWN network.
As Janet relates it: It is based in the UK and is about a woman who had acid thrown on her. She is now working to develop support groups for people (women in particular) with facial differences. For reality TV – it is wonderful. Very human and real approach to the trouble people have – including getting hired in a professional capacity.
For more information--and to see segments, go to:http://www.oprah.com/own/tv-schedule/index.html?date=2011-08-24
August 2011
The SUMMER NEWSLETTER is HERE!
August 2011
SUPPORT FORUMS OPEN!
NF MID-ATLANTIC OPENS THE FIRST DEDICATED online discussion site FOR NF. Written by the NF Community and monitored by the NF Community where people can hold conversations in the form of posted messages
This is the only dedicated forum for NF.
JOIN IT NOW AT:
http://www.nfmidatlanticsupport.com
August 2011
Office Closed 8/22 through 8/25
The NF Mid-Atlantic office will be closed Mon. through Thurs. because the Executive Director is taking a "well deserved holiday" (her words). It will reopen on Friday, August 26th. Thank you!
August 2011
e:60 Paco Rodriquez
This article accompanies the story of the liver donation to NF Mid-Atlantic member Meghan Kingsley that was highlighted on ESPN:60. To see the story, go to:
http://sports.espn.go.com/chicago/columns/story?id=6382633
Meghan Kingsley had enough concerns, but her liver was not one of them.
Meghan Kingsley dreamed of swimming in the Olympics, but has battled nonmalignant tumors in her brain and on her spine.
Sports came naturally to her. Her family lived on the grounds of a ski resort in Hidden Valley, Pa., where her father was a sales manager until she was 2. They later vacationed there, where she and her older brother were introduced to swimming. Meghan idolized Olympic medalists Janet Evans and Summer Sanders, and dreamed herself of competing in the Olympics. When she was 8, she met Evans when the then-Olympian visited Meghan's swim club in Rockville, Md.
From age 8 until 12, Meghan was one of the top swimmers in her age group in Maryland, and she remembered one race in particular when her swim club competed against a rival and it came down to the last relay, and the last flip turn, for the division lead.
"I am like, I'm not going to breathe the whole way back, I'm just going to push as hard as I can," she said. "And I swam the hardest I think I ever swam in my whole life."
Meghan touched the wall one-tenth of a second before her opponent, setting off a wild celebration and a feeling every athlete covets.
"That's something I'll never forget," she said, softly. "I think that was one of my last greatest races I ever swam."
By 13, she began slowing down and tiring easily. Her body was changing, and she assumed she was burning out. She noticed her left foot, which had turned in differently than her right since age 8, was stiffening and more arched, which had been affecting her in the breaststroke. She later noticed weakness in the left leg and balance issues.
At 15, doctors discovered she had some hearing loss, but no one seemed to be able to put all the symptoms together until, at 16, a neurologist diagnosed neurofibromatosis Type 2. Meghan was told she had numerous nonmalignant tumors in her brain and on her spine, and they were dangerous, growing on nerves that made it difficult to walk and eventually caused the loss of hearing in her left ear after the second of two brain surgeries. In the spring of 2009, she learned the hearing in her right ear was failing, as well.
News of a clinical drug trial provided hope to save the hearing in her right ear and perhaps slow the growth of the tumors.
No one told her it would almost kill her.
Meghan Kingsley thought it was a side effect of the trial medication she had been taking that caused her to be so ill in October '09. The idea was to either stabilize or decrease the size of the tumor to stem the hearing loss caused by neurofibromatosis. But two months after beginning the drug trial, her liver began to fail.
Since the transplant, Meghan Kingsley has continued to battle neurofibromatosis.
She was so ill that she can't remember clearly when doctors told her she would need a new liver. On Monday, Nov. 23, they told her they had one, from a male donor her age, 25.
Several hours later, with Meghan in the operating room, the family heard the helicopter land at the hospital.
Meghan has heard the story enough times to tell it herself.
"They all looked at each other like, 'Oh my goodness that's Meghan's liver, this is the moment. She's going to be given a new chance, another new life,'" she said.
Doctors told the family afterward that 10 percent of Meghan's liver was functioning and that if she had not received the new organ, she would have been dead within 48 hours.
August 2011
MA Wilson appointed to Genetic Counseling Program Advisory Council
Mary Ann Wilson, a founder and long-time member of NF Mid-Atlantic Board has been appointed to a 3-year term on the Howard University Genetic Counseling Program Advisory Council. Robert Murray, M.D., former head of the Human Genetics Department at Howard University Medical School and a long time member of the NF Mid-Atlantic Professional Advisory Board has also been appointed.
Congratulations Mary Ann!
August 2011
NF MID-ATLANTIC BOARD OF DIRECTORS ADOPT NEW BYLAWS
The Board of NF Mid-Atlantic has unanimously adopted new bylaws for the organization at their June 2011 meeting. This action is a culmination of over two years of up-dating policies, procedures, staffing and strategies for the future of the agency.
As a result of the new bylaws, over fifty percent of the current Board of Directors will be stepping down at the end of their term, October 2011. This includes President Beverly Dobson; Vice President Peter Childs; Treasurer Penny Freeman; Past President Brenda Duffy; and member-at-large Mary Ann Wilson.
“The contribution of these members has been invaluable”, says Executive Director Barbra Levin. “NF Mid-Atlantic has benefited immeasurably because of these Board Members. Their treasure has been incalculable in terms of sustaining the agency, helping those with NF who had nowhere else to turn, and promoting awareness and research for those with Neurofibromatosis.”
They will be missed—and consulted. NF Mid-Atlantic is happy to announce that past Presidents Beverly Dobson and Brenda Duffy will become members of the Advisory Board.
Thank you to all the Board of Directors for their vision and service!
For more information on the Board or Staff of NF Mid-Atlantic, feel free to call our office toll free at 866-261-1271.
August 2011
SPECIAL ANNOUNCEMENT: OFFICE MAIL PROBLEM
For several weeks we have experienced some difficulties receiving mail. The post office is on the case, but, if you have sent mail to us and it was returned as an "invalid address" we apologize. We are here and we do appreciate your mail. Please contact us if you have had problems. Thank you so much
August 2011
Medicare prescription drug premiums
Medicare average prescription drug premiums will not increase in 2012. The announcement from the U.S. Department of Health and Human Services (HHS) comes as more people with Medicare are receiving discounts on prescription drug costs and no-cost preventive services. New data indicates that 17 million people with Medicare have received free preventive services this year while 900,000 Medicare beneficiaries who hit the prescription drug donut hole have received a 50 percent discount on their prescription drugs.
Under the Affordable Care Act, people with Original Medicare can receive recommended preventive benefits and a new annual wellness visit without paying an additional penny out of pocket. In addition, the Affordable Care Act is closing the prescription drug donut hole by providing increasing discounts on covered drugs in the donut hole. In 2011, the number of people with Medicare benefiting from these improvements is growing.
HHS also announced that the cost of the average Medicare prescription drug plan premium in 2012 will be about $30. The average premium in 2011 is $30.76. The announcement was based on bids submitted by Part D plans for the 2012 plan year.
For more information: http://www.cms.gov/MedicareAdvtgSpecRateStats/RSD/list.asp.
Read full article
July 2011
Anniversary of Americans With Disability Act
July 26th was the 21st anniversary of the AMERICANS WITH DISABILITIES ACT.
President Barack Obama released a proclamation on July 25, 2011 celebrating this milestone, but stated there is "more work to be done, and my Administration remains committed to ending all forms of discrimination and upholding the rights of Americans with disabilities"
July 2011
Department of Defense Psychological Health/Traumatic Brain Injury Research Program Funding Opportunities for Fiscal Year 2011
The PH/TBI Research Program was established in FY07 for the purpose of complementing ongoing Department of Defense (DOD) efforts towards promoting a better standard of care for PH (including post-traumatic stress disorder [PTSD]) and TBI in the areas of prevention, detection, diagnosis, treatment, and rehabilitation. This includes research to benefit service members, their family members, veterans, and other beneficiaries of the Military Health System (MHS).
A total of $586 million (M) has been appropriated to support biomedical research focused on PH/TBI research efforts from FY07 through FY11, with $341.6M being assigned to the US Army Medical Research and Materiel Command (USAMRMC). The FY11 appropriation that has been assigned to USAMRMC is $100M. Approximately $5M of this appropriation has been assigned to the USAMRMC, Military Operational Joint Program Committee 5 for this Program Announcement/Funding Opportunity. The execution agent for this solicitation is the Office of the Congressionally Directed Medical Research Programs (CDMRP).
Post-Traumatic Stress Disorder In-Home Therapy Clinical Trial Principal Investigator's must be at or above level of assistant Professor (or equivalent)
Key Mechanism Elements
*Supports randomized controlled trial comparative effectiveness research comparing behavioral health care delivered via three distinct treatment modalities:
oFace to Face In-Office
oFace to Face In-Home, and
oTele-Behavioral Health (provider-to-in-home patient) *Proposed projects should be designed to include treatment outcome (e.g., patient symptom reduction to below diagnostic threshold) as the metric of primary importance *Preliminary data are required *Clinical trials are expected to be initiated within 12 months of the award date *Applications with collaborations partnering extramural academic, industry, and non-Department of Defense federal investigators, with intramural investigators, including PIs at military treatment facilities and/or Department of Veterans Affairs research laboratories and programs are encouraged
All applications must conform to the program announcements and application instructions that are available for electronic downloading from the Grants.gov website. The application package containing the required forms for each award mechanism will also be found on Grants.gov. A listing of all USAMRMC funding opportunities can be obtained on the Grants.gov website by performing a basic search using CFDA Number 12.420.
A pre-application will be required and must be submitted through the CDMRP eReceipt website (http://cdmrp.org) prior to the pre-application deadline of August 11, 2011. Applications must be submitted through the federal government's single-entry portal, Grants.gov. Requests for email notification of the program announcements release may be sent to help@cdmrp.org. For more information about the PHTBI or other CDMRP-administered programs, please visit the CDMRP website (http://cdmrp.army.mil).
Points of Contact:
CDMRP Public Affairs
301-619-9783
CDMRP.PublicAffairs@amedd.army.mil
July 2011
CAREGIVER SUPPORT GROUP DATE CHANGED
The Caregiver Support Group date has been moved back one month to September 18, 2011. Please contact the office if you have any questions.
June 2011
"Traversing the Education System" slides added to download
Download of Ellen Callegary's slides for "Traversing the Educational System for your Child with a Disability"
Clike here to download Copy of PowerPoint Slides.Callegary.6.26.11.pdf
June 2011
Seminar Photos Added!
Click on photos to view!
June 2011
THANK YOU TO ELLEN CALLEGARY!!!
Thank you Ellen for a WONDERFUL seminar!
31 people came in person to hear your sage advice, and 30 people joined us on the phone.
Lucky people!!!
June 2011
We're STILL COLLECTING FOR TEAM NF!
Click here to donate
Thank you!
May 2011
Organ Donor is ABC News "Person of the Week"
ABC News with Diane Sawyer honored Paco Rodriquez as PERSON OF THE WEEK on Thursday, May 19, 2011. Because of Paco, NF Mid-Atlantic's Meghan Kingsley received a new liver and life! View the story at: "Person of the Week: Boxer Paco Rodriquez"
AND: join the Kingsley family as part of Team NF at Survivor Harbor 7 on June 12, 2011 in Baltimore as they race for NF Mid-Atlantic!
May 2011
JOIN The Team !!
GET YOUR SNEAKERS OUT!
TEAM NF is again participating in Survivor Harbor 7 along the
beautiful Baltimore harbor on June 12, 2011
Join the team to walk or run 7 kilometers (4 miles) or run 7 miles!
Meet others with NF and those who care about them!
Download the registration form!
If you can't participate, SUPPORT THE TEAM AT:
http://www.active.com/donate/teamnf2011
Any questions: email us at: teamnf@nfmidatlantic.org
or call: 866-261-1271
April 2011
Congress Appropriates $16 Million to NF Research
The U.S. Congress has appropriated $16 million through the Department of Defense’s Army’s NF Research Program for fiscal year 2011. NF research not only benefits individuals with NF, but also the men and women who serve in the military.
NF research increases knowledge of nervous system impairment and war-related illnesses and injury. Because NF manifests itself in the nervous system, the Army-supported research on NF addresses peripheral nerve regeneration after injury from such things as missile wounds and chemical toxins. Findings generated by research on NF can make important progress in our understanding of wound healing and regeneration of brain tissue after brain injury, pain management, imagining of the brain as well as in investigating genetic mechanisms which involve not only the nervous system, but also cancers, cognitive function and other diseases affecting military personnel.
April 2011
ebuddies
Do you have a child with NF--or know someone? Here's a safe email pen pal program.
e-Buddies is a fun and safe way to make a new friend. Each participant is matched in a one-to-one
Read full article
February 2011
THE WINTER NEWSLETTER IS HERE!!!
Be among the first to view it!
Clike here to download newsletter_2011_winter.pdf
January 2011
DOWNLOAD THE 2011 CAMP NEW FRIENDS BROCHURE!
Clike here to download Camp NF_CPAfinalB.pdf
January 2011
Winter Newsletter Items Due
ITEMS FOR SUBMISSION INTO THE WINTER NEWSLETTER ARE DUE BY 5 PM via electronic submission to: info@nfmidatlantic.org
Thank you.
November 2010
WATCH ALL 3 PARTS OF THE ANNUAL MEETING
CHECK OUT OUR VIDEO SECTION!!
November 2010
NF INFORMATION IN MANDARIN download
Go to our download section if you need information on NF in Mandarin
(available in perpetuity)
November 2010
Contribution Form for Italian Night
Want to help children with NF? Contribute an item for the silent auction at Italian Night 2010. Proceeds go to fund scholarships to Camp New Friends. Contribution form available in DOWNLOADS.
Thanks!
March 2010
New NF1 findings
Researchers target vascular disease linked to cancer-causing gene mutation
Researchers have discovered how a genetic disease known mainly for its life-threatening tumors also can cause sudden death from cardiovascular disease in children, and are mounting a clinical trial to develop treatments for the problem.
Scientists from the Indiana University School of Medicine found that the mutation that causes neurofibromatosis type 1 disease leads to arterial inflammation and damage that is similar to the long-term damage that can occur as people age. They reported their findings in the March issue of the Journal of Clinical Investigation.
http://www.physorg.com/news188577269.html
