Summer 2016 - Neurofibromatosis Northeast

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The media campaign developed by Durbin's office was coordinated not only with NF advocacy ... blasts and various social
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NEWS

NEUROFIBROMATOSIS NORTHEAST

Volume 28, No. 1

Promoting Research, Awareness and Advocacy since 1988

Hope for NF Research Spurs Family Advocacy

Summer 2016

25-year-old Rebecca (Becky) Grasso was born in South Korea and was adopted by Vito & Susan Grasso when she was 5 months old. As a child Becky developed a number of tumors, but her pediatrician never associated these manifestations with NF. A stellar student at Emma Willard School in Brunswick, NY, as well as a very accomplished ice skater and instructor, Becky was at Sienna College doing a degree in Biology when serious issues began to develop. A decline in her hearing forced further investigations and eventually an ENT physician suspected NF as the cause. Becky was ultimately diagnosed with NF2 at age 19.

As is often the case, when they were given this frightening diagnosis it was difficult for the family to find doctors who had experience with NF. They finally found information about Dr. Scott Plotkin at Massachusetts General Hospital. It was Dr. Plotkin who confirmed the diagnosis of NF2 and immediately suggested that Becky be included in his clinical trial using Avastin.

The entire Grasso family, including Becky’s boyfriend Matt St. Pierre, threw themselves into finding out more about the disorder. As Vito became more familiar with the work done by the various researchers and NF advocacy groups, he realized how important it is to remain current in following research. He attended the NF Midwest symposium in October 2015 and the NF2 State of the Art Conference in New York City in March 2016. Vito and Rebecca Grasso

While much of what he has learned about NF research has been positive and hopeful, it became clear to him that the development of more effective treatments can only be achieved if the relatively small community of NF researchers has additional funding, is well organized and collaborates. Since he has worked in and around government for his entire career he recognized the significant role of government funding and public policy in medical research.

OBSERVATIONS and OPINIONS

continued on page 4

How a coordinated campaign effectively defeated a threat

In February, NF advocates from around the country gathered on Capitol Hill to visit as many congressional offices as possible to talk with members and their staff about NF research funding through the National Institutes of Health, and in particular the Congressionally Directed Medical Research Programs (CDMRP) through the Department of Defense. We were extremely well received and were feeling optimistic that NF research funding would continue, and hopefully be increased. After all, this was our 20th year on the Hill, we are familiar faces in A Twitterstorm the halls of Congress, and each year we can report on significant progress that has been made combined with a as a direct result of the DOD’s NF research program. compelling speech But, our sense of security was rocked in May when we learned of two sections of the FY17 Sen- on the Senate floor ate National Defense Authorization Act (NDAA) that could be problematic to CDMRP programs. helped save critical research! As Chairman of the Senate Armed Services Committee, Senator John McCain was again trying to restrict how defense funding can be used for these programs in the FY17 Defense Authorization. He had included language in the bill that if passed could be extremely detrimental and possibly eliminate the CDMRP. The language continued on page 4

NF Northeast News

The mission of

Neurofibromatosis Northeast is to find treatments and the

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A Message From the Chair of the Board of Directors Collaboration...

In one of our previous newsletters, I had mentioned that collaboration was one of the cornerstones of NF Northeast. Simply put, collaboration is the cooperative arrangement in which two or more parties work towards a common goal. We can do little without collaborating within the NF community and outside of the NF community to facilitate treatments and a cure for NF.

cure for neurofibromatosis by

promoting scientific research, creating awareness, and

providing hope and support to those who are affected by NF.

Board of Directors

Lori Ryan, R.N., M.S., Chair Robert Ryan, Treasurer John Manth, Secretary John Driscoll David Eisenstadt Paul Epstein, D.M.D. Henry Kay Melissa Malerba Cynthia Markey David Rokoff John Shea John Thomson, Ph.D. Nicole Ullrich, M.D., Ph.D. Jessica Wolfe, Ph.D.

Staff

Karen Peluso Executive Director

Paul Laurent Director of Development

Diana Flahive Director of Special Events

Linda Yew Executive Associate and Patient Outreach Coordinator Jennifer Brickley Development Associate

Neurofibromatosis Northeast 9 Bedford Street Burlington, MA 01803 781-272-9936 [email protected]

Follow us online nfincne.org

beautymarknation.org

Lori Ryan, R.N., M.S.

Within the NF community, NF Northeast recently participated in two meetings that brought together several of the NF organizations, including the NF Network, NF Midwest, Texas NF Foundation, Littlest Tumor Foundation, Children’s Tumor Foundation and The NF Team to discuss common issues and focusing on NF advocacy and the NF registry.

Outside of the NF community, we are collaborating with Massachusetts Biotechnology Council (MassBio) and I am one of the co-chairs of the Nonprofit Working Group, which represents core non-profit organizations in academic/hospitals, research institutes, disease foundations/patient groups and other related non-profit organizations. The strength of our organization is dependent on the involvement and engagement of our NF community. There are many ways to collaborate and to get involved for the greater good, such as attending an NF event, hosting a fundraising event, and contacting state and federal representatives to Leaders of NF organizations are collaborating support NF research through the National Institute of Health and Department of Defense’s NF research programs.

Providing support and resources throughout the Northeast is something that NF Northeast strives to do and we always welcome your input and feedback. Helen Keller stated it well, “Alone we can do so little; together we can do so much.”

May - NF Awareness Month

Governor Charlie Baker of Massachusetts signed a Proclamation and met with families. In photo (from left) Marc and Maibel Cellucci, Amy and Caden Spirito, Alex Cellucci, Governor Baker, Republican State Committee Woman Kim Palmer (who we thank for arranging the meeting) Karen Peluso, Steve and Stephanie Powers and Lori Ryan.

Thanks to the efforts of Vito Grasso, Assemblyman John McDonald of New York introduced a Legislative Resolution about NF Awareness Month, and Governor Cuomo also issued a Proclamation. Shown in the photo on the left taken in the Assembly Chamber, are (from left) Rebecca Grasso, Vito Grasso, Assemblyman McDonald, Tanner Williams and his parents Molly and Jeff Williams.

NF Northeast News

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Organization News

Welcome to a New Board Member

Neurofibromatosis Northeast is pleased to announce that Nicole J. Ullrich, M.D., Ph.D. has joined the Board of Directors.

In making the announcement, Lori Ryan, Chair of the Board of Directors commented, “We are so pleased and excited to have Dr. Nicole Ullrich join the Board as she brings such relevant experience from within the NF medical community. Neurofibromatosis Northeast has been adding expertise to the Board over the past few years and Dr. Ullrich adds yet another level. We look forward to closely working with her as we move towards finding treatments and a cure for NF.”

Dr. Ullrich is a dedicated onco-neurologist who maintains an active practice both at Boston Children’s Hospital and Dana-Farber Cancer Institute, caring for children both on active therapy and for many years after their treatment. She has a record of Nicole Ullrich, M.D., Ph.D. successful and productive studies of acute and chronic neurologic effects of childhood cancer and brain tumors, as well as studies of neurologic sequelae and targeted interventions for tumor-related and cognitive complications of Neurofibromatosis type 1 (NF1).

Dr. Ullrich has completed several clinical studies evaluating risk factors for neurologic late effects of cancer and the neuro-oncological aspects of NF1. Her doctoral research led to the identification of a novel target for treatment of primary brain tumors, which is now in Phase III clinical trials in adults and Phase I clinical trials in children. Dr. Ullrich serves as overall study Primary Investigator for the first clinical trial through Children’s Oncology Group to attempt to remediate cognitive difficulties in children and adolescents treated for a primary brain tumor, as well as Primary Investigator of the multicenter NF Clinical Trials Consortium that has now opened 6 planned clinical trials as interventions for complications of NF1, including plexiform neurofibromas, brain tumors, and cognitive difficulties.

With an undergraduate degree from Brown University and an MD/PhD from Yale University, Dr. Ullrich did her internship, residency and Fellowship at Boston Children’s Hospital as well as at Dana-Farber Cancer Institute in Boston. Serving as Director of NeuroOncology at Boston Children’s Hospital and Director of Neurologic NeuroOncology at Dana-Farber since 2005, Dr. Ullrich holds a number of academic posts at the Harvard Medical School and 5 patents for methods of diagnosing and treating gliomas.

2016 Scholarship Recipients

NF Northeast’s Scholarship Program was established with funds raised at Steps2Cure NF walks and road races. The scholarships assist people with NF to continue their education after high school and pursue undergraduate degrees.

The annual application deadline is April 15th. More information about the program is available at www.nfincne.org.

Nicole Greider from CT, will attend Merrimack College

Benjamin Thompson from MA, will attend Fitchburg State University

Juliana Jesulaitis from CT, will attend Southern New Hampshire U

Ashley Wimble from NY, will attend State University of NY

Brianna Stanford from NY, will attend Fulton Montgomery CC

Melissa Yew from MA, will attend Lesley College

NF Northeast News

Grasso family continued

Vito became active in NF advocacy and applied the skills and experience he had that might help obtain the resources necessary to find better treatment options and the cure.

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He participated in the annual NF Network Advocacy trip to Capitol Hill in February to visit Members of Congress and encourage continuation of funding for NF research at the National Institutes of Health and through the Department of Defense’s Congressionally Directed Medical Research Program (CDMRP). He was recently nominated to serve as a Consumer Representative on the CDMRP Peer Review Panel.

In the run up to the spring appropriations process, Vito, who is Executive Matt St. Pierre, Becky, Susan and Vito Grasso Vice President of the New York State Academy of Family Physicians reached out to his colleagues who hold similar positions all over the United States. He asked them to help increase constituent pressure on Congress to support NF funding by contacting the Senators and Congressmen in their respective states. They rallied around Vito in great form and letters to Congress were sent from all over the country!

To help increase awareness on a local level he worked with Assemblyman John McDonald and Governor Andrew Cuomo to get resolutions approved by the NY State Legislature and by the Governor to declare “May is NF Awareness Month” (see page 2). As with all parents of a child with NF, Vito is concerned for his daughter’s health, well-being and happiness. He wanted the cure to be found yesterday, and has made a commitment to assist wherever possible.

His involvement with the NF community has exposed him to other families affected by NF and he has been touched by their stories and inspired further by the resilience and determination of so many people. His willingness to help is greatly appreciated and his impact proBecky (r) with her sister found. It is always awe-inspiring to see strength in the face of adversity and the Grassos are Caroline a wonderful example of what you can do when confronted with challenge. Case in point, while Vito is working on the advocacy piece, Becky is completing work on a doctoral degree in Physical Therapy.

would need to be struck from the bill, and we didn’t have much time to react as it would be brought to the floor within a week or so.

Campaign continued

Thankfully Senators Cochran and Durbin, Chairman and Ranking Member of the Defense Appropriations Subcommittee, are very supportive of medical research in general, as are many other members of the Senate. With leadership from Senator Durbin’s office, a strategy to combat the language was developed where Senator Durbin would propose an amendment to the bill which would strike the harmful language, and NF advocacy groups (with help from the NF Network) would reach out to our NF champions in the Senate to make sure they knew about the threat and would support Durbin’s amendment.

The media campaign developed by Durbin’s office was coordinated not only with NF advocacy groups, but also with the other Defense Health funded organizations. This included a large social media push using the hashtag #ResearchNotRedTape which was disseminated using email blasts and various social media platforms, culminating in a 2-hour “Twitterstorm” on June 7th. During this time, advocacy groups tweeted and retweeted talking points along with graphics just as Senator Durbin gave an extremely compelling speech on the Senate floor to defend the critical research that has already been hugely beneficial, not only to the military, but to all Americans.

Our barrage of tweets and retweets during this 2-hour period using both NF Northeast and Beauty Mark Nation twitter accounts put us in the top 5 ranking for the hashtag #ResearchNotRedTape among all the advocacy groups who participated. Fortunately, the media blitz on the Senate via email and Twitter was successful and Senator Durbin’s amendment to the FY17 National Defense Authorization Act (NDAA) was passed by a vote of 66 to 32 - and the harmful language was removed! As the result of extensive collaboration across the country, a major threat to NF research was countered and beaten back.

NF Northeast News

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NF Northeast’s Sustained Giving Program

David Eisenstadt, a member of the NF Northeast Board of Directors, is a Sustaining Giver and has been making a monthly gift for over a decade. The result of David’s giving to NF Northeast has been impactful. Each month, like clockwork, David’s gift comes in and assists NF Northeast’s mission without fail. We know we can count on David’s gift and it makes a big impact.

David explains, “I started making monthly contributions to NF Northeast about 10 years ago. Initially, I did it because I had been inundated with requests from so many charities at the end of the year, and I wanted to amortize my annual contribution to make it easier on my finances. I find it to be a painless and fantastic way to help a great charity. Basically, it’s easy, effective and I don’t have to worry about it. I know my gift is working and I don’t lose sleep thinking have I sent my gift in? I am very pleased to give the way I do and would recommend that others sign up as well.”

David Eisenstadt

Be like David. Help make the goal of a world without NF a reality! Contact the NF Office or use the enclosed pledge form/envelope and send it back to NF Northeast today!

What is a Sustaining Gift?

A sustaining gift is an ongoing, specific gift amount determined by a donor that is charged monthly to a donor’s credit card or debit card. Your sustaining gifts will be a dependable source of support that NF Northeast can count on throughout the year.

How do you sign-up?

Complete the donation form/envelope enclosed or contact the NF Office.

Program Benefits

Spreading your support throughout the year is a convenient way to include your donations in your personal budget. Monthly giving is also the most cost-efficient way to deliver your support.

You will know that you are helping NF Northeast provide programs and support services that so many in the NF community rely on.

A LITTLE EACH MONTH ADDS UP TO A LOT IN A YEAR! for example: $10.00 $25.00 $41.67 $83.34 $208.34

per month is per month is per month is per month is per month is

$120.00 $300.00 $500.00 $1,000.00 $2,500.00

per year per year per year per year per year

When you make your recurring gift, your donation will appear each month on your credit card. NF Northeast will send you a calendar year-end tax receipt each January to help you in your tax preparations and you will not receive phone or direct mail solicitations.

Flexibility is built in and if for any reason you wish to increase, decrease or discontinue your monthly gift to NF Northeast, just email or call and we will gladly accommodate your wishes.

Where Your Support Goes The Programs of NF Northeast

- Promoting and funding NF research

- Creating awareness of NF

- Providing hope and support to patients and families

Fundraising 6%

Management 11%

Programs 83%

Source - NF Northeast Audited Financials

For more information about:  Programs, Management, Governance and Financials of NF Northeast visit the Giving Common at www.givingcommon.org

NF Northeast News

Making a difference in the fight to cure NF...

Kristina Rath and Christine Boyer

Stephanie McIsaac

This year NF Northeast had 3 runners who fundraised and ran in the 120th running of the Boston Marathon. Thankfully, NF Northeast Board Member, David Eisenstadt helped secure three coveted bibs for Dr. Kristina Rath, from CT, who finished in 4:45:22; Christine Boyer, from RI, who finished in 4:59:55 and Stephanie McIsaac, from MA (who ran for NF Northeast last year as well) completed the 26.2 miles in 4:51:29. A huge thank you to all three experienced marathoners for not only helping raise much needed funds for NF research, but who also looked great in the new NF Northeast singlets!

On April 6th, NF Northeast celebrated the 17th Annual Table for TEN dining event in Boston with Honorary CoChairpersons Jenny Johnson, co-host of NESN’s “Dining Playbook,” and Chris Himmel, Executive VP of Himmel Hospitality Group (Grill 23 & Bar, Harvest and Post 390). Diners enjoyed spectacular fare at over 25 of the city’s top restaurants before closing out their night at the University of Massachusetts Chris Himmel and Jenny Johnson

Club with a decadent dessert reception, auction, entertainment by Jerry Thornton and live music by Ancient Mysteries featuring volunteers Jerry Thornton Kevin McKelvey and Ben Buttrick. It was a great success and fun was had by all!

Special guest, Lizzy Hubbard, delivered a powerful speech during the golf tournament banquet. Lizzy told the audience about the many challenges she has endured because of NF, and talked candidly about being bullied because of her appearance. She thanked people in the room for supporting NF Camp. For her attending camp was a life changing experience that helped her develop confidence, improve her self image and, most of all, develop lifelong friendships.

Lizzy Hubbard

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Shufflin’ off to Buffalo – for the Buffalo Marathon! On a hot May 29th, the Manth family once again marshalled the troops out in support of Leah. The Run4Leah Team, sporting the bright green teeshirt, is an integral part to the success of the race. Not only do volunteers The Manth Family help the runners along the course but the team helps manage the registration process for the race, and does it with style and panache! This year, Run4Leah had 75 runners and over 100 volunteers take part making the race another fantastic one for all the participants as well as raising awareNorth Tonawanda High School Track Team ness and research joined over 100 volunteers dollars for NF2. On June 13th, NF Northeast held the 31st Annual Golf Tournament at the International GC. It was a very special reunion with Boston Celtics Great Tommy Heinsohn who returned as Honorary Chair, a role he held for 13 years a decade ago. The success of this, NF Northeast’s cornerstone event, Tommy Heinsohn caught up with many would not be possible longtime friends including Bob and Chris without the longstandGoodwin ing support and generosity of Grand Circle Corporation and the many sponsors. Attendees this year were treated to the hilarious comedy of Paul D’Angelo and Master of Ceremonies was Hank Morse of WROR’s Loren and Wally Morning Show. The golf committee, under the leadership of Steve Picardi, continues to raise the bar on this event, and is already planning the 32nd Annual Tournament! Steve Picardi and Gino Cappelletti

NF Northeast News

The Third Annual Steps2Cure NF Walk in Camden, NY took place on Saturday, May 21st at Forest Park. This wonderful event, organized by Amanda Metott and Melissa Choquette, grows every year as more NF patients, families and friends come out for a 2 mile walk and to enjoy refreshments, raffles and fun! Special guests included “Minnie Mouse” who looked so very fetching in her polka dots in the forest and a few four legged friends made the day a very special one, indeed.

IN  M EM OR IAM

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Erin Dawson of Peabody, Massachusetts at age 29. Erin had NF1. Brittany Roche from Antrim, New Hampshire at age 25. Brittany had NF1.

Steven Schlussel of Port Washington, New York, at age 70. Co-founded the NF Network Advocacy group that has helped secure over $300 million for NF.

Is there a Steps2Cure NF event near you?

Why not start one? Other NF families and friends have organized walks and/or road races in their area and have built a wonderful community of support. You would be surprised to know that there are probably other families living nearby who would love to get together to help in the fight to increase awareness and raise funds for NF. Call the NF Office and we will help you plan your Steps2Cure NF event.

On June 16th, the Burlington Area Chamber of Commerce’s (BACC) Women in Business Group sponsored a Networking Night of Giving Back with a Whiskey Tasting at The Bancroft. NF Northeast (member of the BACC since 1999) was the lucky nonprofit chosen to receive the net proceeds from the event.

NF Mom Melissa White wanted to combine her love for the Kentucky Derby and her passion for finding a cure for neurofibromatosis into one event which led to the 1st Annual Hats, Horses & Hope on May 7th. One hundred well-dressed and stylish supporters of NF Northeast sipped mint juleps, bet on their favorite horse and came together to support the race to cure NF. Guests watched the Derby on a large screen while enjoying dinner by Blue Ribbon BBQ, a raffle and silent auction. New friends and old donned their most outrageous hats and outfits and got saddled up in the vintage barn at WrightKevin and Liza McKelvey Locke Farm in Winchester, MA. The prize winning hat worn

Melissa White & Scott Rohnstrom

by Anna Fox, actually lit up!

expertly managed the betting window

9 Bedford Street Burlington, MA 01803 NEUROFIBROMATOSIS NORTHEAST

return service requested

Upcoming Events

NF Team Runs the Falmouth Road Race Sunday, August 21st Coast to the Cure Bike Ride Saturday, September 10th Stage Fort Park in Gloucester, MA

2nd Annual Clubbing for Caden Saturday, September 17th Brockton Country Club in Brockton, MA

Lakes Region Tri-Festival in Bristol, NH Jeff Brown’s Team in Memory of Brittany Roche Sunday, September 25th 18th Annual Fall Golf Classic Tournament Monday, September 26th at The Four Oaks Country Club in Dracut, MA 3rd Annual Steps2Cure NF Walk/Run Sunday, October 9th at The Crossings of Colonie, Loudonville, NY

10th Annual Steps2Cure NF Walk and 5K Run Sunday, October 23rd at Lake Quannapowitt in Wakefield, MA 7th Annual Committed to Curing NF Saturday, November 5th at Anthony’s of Malden, MA

3rd Annual Awareness is Key Comedy Night Saturday, November 19th Occasions At Village South, Raynham, MA 

Save the Date for the

NF Patient Symposium Saturday, September 24th at

Boston Children’s Hospital

The full day program will include NF1, NF2 and Schwannomatosis updates and breakout sessions.

Keynote Address by: Staci Martin from the National Cancer Institute “Innovative Methods of Coping with Chronic Pain in the Neurofibromatoses”

Refer to the NF Northeast website for the final program and registration information - - www.nfincne.org

Thanks for your support!