NEWS Promoting Research, Awareness and Advocacy since 1988 Volume 25, No. 1 NEUROFIBROMATOSIS NORTHEAST Fall 2013 Hope For Deniro Five years ago, if you asked me what NF was, I would have said “I’ve never heard of it.” Unfortunately, now I am reminded of NF every day when I look at written by Jessica Bruno my son Deniro. In fact, those two letters that are so insignificant to many have become my world, my life, and my fight! Deniro, my second son, was born in 2007. It was the perfect pregnancy and he was the perfect baby. His one week check-up was fine except for a couple of small tan birthmarks that his doctor discovered. His pediatrician called them “café au lait” birthmarks, or CAL spots, as she began to count them. Because of the close attention paid to them by the doctor, I made a mental note of what they were called. I remember heading straight home and jumping on the computer to look up café au lait birthmarks. That day marked the day that Google introduced me to neurofibromatosis: deformity, tumors, cancer…the websites spit out all sorts of terrifying information and I was horrified. I searched and searched until I discovered a site that told me what I wanted to hear. Café au lait spots can be found on all children even if they don’t have NF. This statement got me through the next year and a half. By this time, my husband Dean, two sons, Domenic and Deniro and I were living Jessica and Dean Bruno with their children a typical happy life. Only occasionally did I think about NF and Deniro was doing great. However, we noticed that he had spoken few words for his age and didn’t seem as active as he should have been. I got the ball rolling for Early Intervention Services and took him to see a neurologist, because his pediatrician had noticed that the left side of his face appeared to be slightly droopy and she wanted to rule out any muscle or nerve damage. I wasn’t too alarmed though since everything discussed had a reasonable explanation and didn’t necessarily signify anything too worrisome. A month later, Deniro had an appointment with a neurologist who ordered an MRI that showed a few “unidentified bright objects” on his cerebellum. She said this is common Deniro in children with NF and she recommended that Deniro be seen by an NF clinic affiliated doctor. The doctor at the NF clinic told us Deniro was suspected of having NF, but we would have to wait and see if other symptoms developed. I asked a few questions and by the time I left the NF clinic, I had grasped onto the answers I wanted to hear, “there are children who have similar symptoms to Deniro that do not have NF.” Looking back, I now realize I only wanted to hear positive feedback and could not face the reality of the negative. We got through another year while our family doubled in size as we welcomed the birth of our identical twin girls. We went in for his annual visit at the NF clinic not really expecting anything new. I had asked for genetic testing and this time the doctor agreed and also ordered another MRI. Deniro continued on page 8 NFNE Scholarship Recipients Daniel Pierce Lyndon State College, Freshman year Emily George Learn more about the NF Scholarship Program on page 10 State University of New York, Oswego, Freshman year John Cultrara, Jr. Erie Community College Freshman year Kelly Robbins Western New England University, Senior year Stephan Zepeda LeColst Rochester Institute of Technology, Freshman year NF Northeast News The mission of Neurofibromatosis Northeast is to find treatments and the cure for neurofibromatosis by promoting scientific research, creating awareness, and providing hope and support to those who are affected by NF. Board of Directors Dr. Paul D. Epstein, Chairman Robert Ryan, Treasurer Lori Ryan, RN, MS, Secretary John Driscoll David Eisenstadt Henry Kay Melissa Malerba John Manth David Rokoff Jessica Wolfe, PhD Staff Karen Peluso Executive Director Paul Laurent Director of Development Sonja Nathan Special Events Director Linda Yew Executive Associate and Patient Outreach Coordinator Jennifer Brickley Executive Associate/Marketing .... Neurofibromatosis Northeast 9 Bedford Street Burlington, MA 01803 781-272-9936 [email protected] Follow us online nfincne.org beautymarknation.org Reflections on 25 years... page 2 When our daughter was diagnosed with neurofibromatosis our lives took an unexpected turn down an unchartered road. At that time, there was very little accurate information about NF available to us, and it was a hopeless feeling to know that hardly any scientists were even interested in studying NF. We didn’t have a road map for the journey that lay ahead of us, but we were driven forward by frustration and determination. Fortunately, there were many kind and generous people we met along the way who knew a lot more about building a nonprofit organization than we did. We Bert Peluso owe them a debt of gratitude for mentoring us, prodding Co-Founder us, and sometimes carrying us. What started as a hand- Neurofibromatosis Incorporated ful of people sitting around a kitchen table has grown into Neurofibromatosis Northeast, an organization that I am proud to say, has had a huge impact on the fight to cure NF and is a highly regarded resource for patients and families. The changes over the past 25 years have been astounding, and today, when patients are given the diagnosis of NF they immediately have a place to turn to for information, comfort and support. Plus, they can be buoyed by the fact that NF Northeast has been a leader in advocacy. In addition to providing research grants to NF scientists at leading research institutions, NFNE has helped secure over $500 million of federal funding for critical NF research. I am so pleased that now all children can have the opportunity to attend camp at no cost to their often financially burdened families. Camp is a safe haven where children and teens who have NF can find acceptance and make lifelong friends. I know this firsthand, having seen the life changing effect that attending NF camp had on our daughter. The feelings of hopelessness I had so many years ago are gone, and I can feel the energy all around us as we move closer to fulfilling our mission. That handful of volunteers at the kitchen table has been transformed into a large, well informed and unwavering army in the fight to cure NF. We have built a momentum and we are unstoppable now. Together we will see this to the end. Yours truly, Bert Peluso While we are proud of the strides that have been made in our efforts to find treatments and the cure for NF over the past 25 years, our work is not done. With your help we are renewing our commitment to promote research, create awareness and be a resource and advocate for NF patients. NF Northeast News From humble beginnings, and with the help of good friends along the way, NF Northeast has become a leader in the fight to cure NF. page 3 NF, Inc., Mass Bay Area In the beginning, funds were raised at was founded in 1988, and the golf tournaments and pizza parties name was later changed to NF Northeast to better reflect the area we serve Research grants have been presented to NF scientists NF Northeast was a driving force behind the creation of the Harvard Medical School Center for NF and Allied Disorders (CNfAD) Along with promoting and funding research, support is given to NF clinics at Boston Children’s Hospital and Massachusetts General Hospital Since 1996, we have advocated for federally funded research generating over $500 million for NF scientists NF Northeast News Committed to Curing NF page 4 Over 500 people turned out on Saturday, November 2nd to support this tremendous effort spearheaded by NF Board member Melissa Malerba and her husband, Mike. For the fourth year in a row, the Malerbas hosted the fundraiser at Anthony’s in Malden in honor of their son, Jonathan. The evening featured a performance by comedian Paul Gilligan, buffet dinner, dancing, a live and silent auction and raffles. Many thanks go out to all the sponsors and donors as well as auctioneer “extraordinaire”, Merideth Ellis! Steps2Cure NF Walk and 5K Road Race 15th Annual Fall Golf Classic The tournament took place at Four Oaks Country Club in Dracut on Monday, September 30th. This popular event was started 15 years ago by two large families who have a loved one with NF. A particularly moving moment of the day occurred when one of the event’s founders, Bill Mahoney, took to the podium during dinner and spoke about his granddaughter and her experience with NF. The committee was pleased to have Callahan, Dewan & Murphy P.C. return as Platinum Sponsor. The 7th Annual Steps2Cure NF Walk/Run returned to Lake Quannapowitt in Wakefield on Sunday, October 20th with over 250 people in attendance, including many families affected by NF. Children came in costume and participated in the Kids Dash prior to the start of the walk and timed run. Many then completed the 3 mile route with their parents while picking up goodies at stops along the way as part of the newly created “Treat Trail”. WROR radio personality Hank Morse emceed the event while Dean Bruno and Rich Moretti got the crowd energized with upbeat music. Northeast Regional Ambulance Service and Neal O’Brien, Jr. “Love is Magic” Foundation signed on as Silver Sponsors. Team Deniro, splendid in their red shirts, claimed the Highest Fundraising team prize for an unprecedented third year in a row. A debt of gratitude goes to Steps2Cure Chairperson and Founder Lori Ryan for another well run event. Connecticut Family Raises Dough for NF at Bake Sale Debra Boyle was spurred on by her eight year old son, Jeff, to hold a fundraiser for NF. She approached a local retailer not far from their Farmington, CT home, and asked for permission to hold a bake sale. Jeff, who has NF, really enjoyed the experience and was a natural at fundraising. With the help of friends who assisted with baking and staffed the table, their effort to raise funds and awareness for NF yielded nearly $800. Jeff is thrilled by their firsttime success and is looking forward to their next event. NF Northeast News page 5 Coast to the Cure Bike Rides Cyclists from as far as Quebec participated in the 3rd Annual Coast to the Cure bike rides amidst ideal weather conditions. This year saw a change in venue for both the On-Road and Mountain Bike portions of the event as they relocated to Stage Fort Park in Gloucester and Beverly Commons/Greenwood Ave. Forest Preserve respectively. Afterwards cyclists, friends and family gathered at Stage Fort Park for a delicious BBQ and breathtaking views of Gloucester Harbor. Michelle Donovan, Captain of the Riding for Roo team, maintained her title as Highest Fundraiser for the third consecutive year. Event sponsors were Grand Circle Corporation, Ipswich Bay Glass, Leader Bank and New England BioLabs. A shout out to Event Co-Chairs, Kate Duff and Dan McKee, for their leadership and considerable time spent on the On-Road routes, Kevin McKelvey for mapping the course at the new Mountain Bike Challenge location, and Keith Quenzel and Tony Spencer for their catering expertise. 28th Annual NF Golf Tournament at The International For the 28th year the exclusive International Golf Course was the location for this golf tournament - the cornerstone on which NF Northeast was built. Participants enjoyed a wonderful day of golf and a BBQ lunch on the Pines and Oaks courses followed by dinner, a performance by funnyman and crowd favorite, Paul D’Angelo, and a live auction. Shawn Feeney and Bob Lobel brought it all home with an impassioned plea for Camp New Friends, and during the banquet special tribute was paid to Anthony Athanas in appreciation of his continued generosity. Dwight and Susan Evans returned as Honorary Chairs as did longtime Presenting Sponsor Grand Circle Corporation. A big thank you goes to Steve Picardi for overseeing the effort as Tournament Chairman. Falmouth Road Race Fifteen runners competed in the 41st running of the Falmouth Road Race on behalf of Neurofibromatosis Northeast. We’re looking to grow our team in 2014. Boston Marathon NF Northeast has participated in the Boston Marathon for the past 25 years. On Monday, April 15, 2013 two of our team members had crossed the finish line before the race was suspended. Runners who weren’t able to finish were invited to participate in the 2014 event. Joining those runners will be additional participants, thanks to the John Hancock Marathon Program. NF Northeast News 25th Anniversary Celebration Neurofibromatosis Northeast celebrated its 25th Anniversary in grand style! Nearly 300 people attended an elegant soiree at the Black Falcon Cruise Terminal in Boston’s Seaport. Guests enjoyed “BeautyMark-tini’s”, the signature drink for the evening, and were dazzled as models from the NF community walked the runway wearing fashions from Ted Baker London. Following cocktails, they noshed on chef tastings from many of Boston’s signature restaurants and pastries from the venerable Montilio’s Baking Company while reconnecting with old friends and making new ones. Boston media personalities Jenny Johnson and Billy Costa served as commentators for the fashion show and did a stupendous job as Guest Auctioneers. Ron Della Chiesa, WGBH Radio Host and Voice of the Boston Symphony, was the Master of Ceremonies. Naomi Stonberg and Liza McKelvey co-chaired this memorable event. Fabiola LeColst, parent of a son with NF2, gave a passionate presentation that reminded guests why they were there - to cure NF! page 6 NF Northeast News page 7 The Board of Directors of Neurofibromatosis Northeast is pleased to announce the establishment of a special new campaign to raise funds to support Advocacy and Awareness efforts. The award is named in honor of NFNE’s Executive Director, Karen Peluso, who has been a leader in the organization for 25 years. Karen was a member of the founding board of NF, Incorporated, along with her husband, Bert, and has served as Executive Director since 1994. The campaign’s launch coincides with the organization’s 25th Anniversary. A tireless advocate on behalf of NF and someone who is committed to finding a cure and making neurofibromatosis “a household word”, Karen has served as a member of the Board of Directors of the National Neurofibromatosis Foundation and was Co-President of the Massachusetts NNFF Chapter from 1985-1987. During that time she and Bert received the NNFF’s Courtemanche Award for Leadership. In 2006, Karen received the Karen Peluso was honored at the 25th Anniversary Event “Changing People’s Lives Award” from the Grand Circle Foundation in recognition of her NF advocacy. To advance NF’s Advocacy and Awareness efforts, Karen has been making trips to Washington, D.C. since 1996 to meet with members of Congress to promote NF research at the National level. She has testified before both the House and Senate Defense Appropriations sub committees, and joined other leaders in NF advocacy to form the National NF Coalition. Their combined efforts have resulted in the appropriation of over $500 million from the National Institutes of Health and the Department of Defense for NF research purposes over the past 17 years. Promoting advocacy and awareness is one of the most effective ways of reaching people and informing them about NF. This fund is not only a fitting tribute to Karen and her life-long mission, but will allow NFNE to spread the word to a wider audience, a vital component to what the organization does. Please consider making a contribution to this fund so that we can honor Karen and continue her work. For more information please contact Paul Laurent, Director of Development, NFNE at 781-272 9936 or [email protected]. The Board of Directors and those affected by NF thank you! hana NEW AMERICAN CUISINE NF Northeast News page 8 Deniro continued from page 1 As the day neared for Deniro’s MRI, I continued to stay positive only occasionally allowing the “what ifs” to haunt me. The suspense was killing me. That night following the MRI, our doctor called with news that turned my life upside down. I remember my very first thought was, “How am I going to survive this”? Deniro was officially diagnosed with NF. The MRI showed he had a plexiform neurofibroma in his left cheek. I didn’t even have enough time to do what I did best, which was to deny the negative and hold on to the positive because the genetic testing results were also back and confirmed NF. There was no way to deny he had NF. The next few days were very emotional. I was in a state of shock, being forced to face what I had so desperately tried to run away from these past couple of years. Several days were spent crying, filled with worry, fear and disbelief that this was happening to my family. What got me through the last couple of years was hope and faith and now, I no longer had it. I couldn’t imagine what would happen to Deniro and all I wanted was to hide in my closet curled up in a ball to escape my reality; but I couldn’t. I had 4 children and a husband. I had to pull it together. Through all of the emotions I felt, I woke up one morning and had gained the courage, strength and drive to become my son’s lifelong advocate. All things related to NF became a mission for me, my husband and our family. We have since been actively involved in fundraising, advocacy and awareness. I spend endless hours on the computer networking with families across the country, sharing stories and discussing the latest in NF research. My husband has travelled to Washington D.C. in hopes of securing additional funding for research. The children are by our sides, although they don’t quite understand NF, they know that these two letters are important to our family, especially Deniro. Beauty Mark Nation was launched to raise awareness of NF. Many people wear a temporary tattoo that represents the “beauty marks” or café au lait spots of NF. The tattoos can be adorned to show support and raise awareness. NF is a permanent part of my life, which is why I opted for the permanent tattoo. Our “tattoo day” came and I decided to bring a video camera to capture the occasion mostly because no one knew my mother (a straight and narrow nurse) was getting a tattoo. I posted a short video on Facebook and within minutes both of my brothers were on the phone with her in disbelief. While we were getting our tattoos I knew I was doing it for Deniro and others affected by NF, but after watching the video I realized that my tattoo became my own personal symbol reminding me of my mission. Believe it or not, it makes me feel better every time I look at it. Jessica and her mother Regina I remember the terrifying feelings I once had after learning about Deniro’s diagnosis, but Hale display their tattoos since then, this tattoo reminds me of that turning point: the day I woke up with this sudden surge of strength to fight for Deniro. The fight continues; I do have some bad days where I question “why Deniro,” but most of the time, I glance at my tattoo and remember it symbolizes my “Hope for Deniro!” Did you see the billboard campaign that has been on a major highway in Massachusetts? Beauty Mark Nation Marches On! It has been two years since Beauty Mark Nation was launched and with the help of the NF Network, Facebook and Twitter, the Beauty Mark Nation tattoo has gone international. Beauty Mark Nation has been present at NF walks and events all over the United States, and has been established in countries as far away as New Zealand and South Africa. NF Northeast News NF Awareness and Advocacy page 9 Advocacy is one of the most important ongoing programs of our organization. By visiting with members of Congress, educating them about NF and asking for their support for federally funded research, we have seen significant scientific advances made by the DOD NF Research Program as well as through the National Institutes of Health. These efforts have paid off, but we need everyone to help. Please write or call your Representative or Senators and tell them that NF research is important to you. Governor Lincoln Chafee of Rhode Island met with NF families to show his support. Chafee joined other New England Governors who signed proclamations declaring May is NF Awareness Month Determined to make neurofibromatosis a household word, we have an ongoing public awareness campaign. With more awareness more funds for NF research will follow. SCIENTIFIC PEER REVIEW OF NEUROFIBROMATOSIS RESEARCH APPLICATIONS FOR THE DEPARTMENT OF DEFENSE Neurofibomatosis advocate, Michelle Hirsch Donovan, recently participated in the evaluation of research applications submitted to the Neurofibromatosis Research Program (NFRP) sponsored by the Department of Defense. Michelle was nominated for participation in the program by Neurofibromatosis Northeast. As a consumer reviewer, she was a full voting member, along with prominent scientists, at meetings to help determine how the $15M appropriated by Congress for Fiscal Year 2013 (FY13) will be spent on future neurofibromatosis research. Commenting on serving as a consumer reviewer, Michelle said that “My experience as a consumer reviewer was extremely positive, rewarding, and educational. It allowed me to bridge my personal experience with neurofibromatosis [my 8 year old daughter has NF1] with my background as a physician-scientist. It was exciting and encouraging to see the Michelle Hirsch Donovan, MD, PhD cutting edge research proposals that could potentially have profound effects on those with NF, and I was honored to be able to offer my opinions regarding proposal impact. The staff and scientific reviewers were wonderful to work with, and they clearly respected the opinions of the consumer reviewers. To this effect, it was great to observe the overall evaluation process being based on both scientific merit as well as potential impact for patients, which is a unique set-up provided by the DOD. Additionally, I am thankful to NFNE for giving me this unique opportunity to be ‘proactive’ on behalf of all those affected by NF.” The Department of Defense Neurofibromatosis Research Program (NFRP) fills important gaps not addressed by other funding agencies by supporting groundbreaking, high-risk, high-gain research while encouraging out-of-thebox thinking. More information about the Department of Defense Neurofibromatosis Research Program is available at the Website: http://cdmrp.army.mil NF Northeast News page 10 Staff News Paul H. Laurent has been appointed Director of Development for Neurofibromatosis Northeast to lead and grow our development activities at a pivotal point in the organization’s 25 year history. Paul brings to the role significant development experience plus a sound mix of international not-for-profit and private sector work, especially in the conduct of donor outreach, business development, marketing and brand development. Paul comes to NFNE from United Way of Massachusetts Bay & Merrimack Valley where he was Senior Director, Major Donor Engagement and was responsible for cultivating and stewarding relationships with major donors and prospects across all industries. Paul holds a BA from Tufts University, and an MA from the University of Birmingham, England. Paul has served as Director and Deputy Chairman of the Midlands chapter of the British American Business Council (the largest transatlantic business network), served as a member of the Board of Overseers at Plimoth Plantation and is currently a sitting member of the Natick School Committee having been re-elected to another 3 year term in 2013. Paul Laurent Inspire, Motivate, Play Against Challenges Together – Making a Big IMPACT NF teens drafted by College Athletic Teams Dylan Flynn has NF1 and underwent surgery for a brain tumor last year. Team IMPACT, a non-profit organization dedicated to creating unparalleled team based support systems for kids who are facing life threatening illnesses, introduced Dylan to the Boston University Basketball Team who ‘drafted’ him as one of their own. Now, Dylan attends practice and games where he helps out and cheers his new friends on. To show their support and friendship for Dylan, the team participated in Steps2Cure NF where they joined in all the activities. Dylan is shown in the center of the photo on the left surrounded by “his team”. If you know someone who could benefit from Team IMPACT, contact them at www.goteamimpact.org. Leah Manth may face many challenges because of her NF2 but she has inspired many people to get involved to show support and raise funds for NF2 research. For the past 6 years, hundreds of runners and volunteers have participated in “Team Run4Leah” and raised over $250,000 running the Buffalo Marathon. Leah also inspired the members of the St. Canisius College Women’s Basketball Team who asked her to become an honorary member of their team, and they established an incentive - “3 for A Cure” to raise funds for NF2 research. Leah has become more than a member of the team, she and her family have become lifelong friends with these remarkable young women - some who are shown at right visiting Leah after her recent surgery. Profile on 2013 NF Northeast Scholarship recipient Stephan Zepeda LeColst: NF Northeast Scholarship recipient Stephan LeColst is in his first year at the Rochester Institute of Technology (RIT). Stephan has NF2 and, as a result of tumor compression in the brain, has lost his hearing completely. RIT caught Stephan’s attention early on since the National Technical Institute for the Deaf is one of nine colleges on the RIT campus. An outstanding high school student with a gift for math, Stephan was accepted into one of the mainstream programs, the Thomas Golisano College of Computer and Information Sciences, with NTID support. He lives in a residence hall that is equipped with strobe lights for fire alarms along with other visual cues and has access to ASL interpreters, note taking c-print (live close captioning durThe NF Northeast Scholarships are awarded to as- ing classes) and other services availsist persons with neurofibromatosis (NF) to conable for the deaf. One positive aspect is that RIT is home to tinue their education after high school. Grants of many individuals well-versed in sign language. Although far $1,000 are awarded annually to go towards college from his Massachusetts home, he has access to a neuro-oncolorelated expenses, such as tuition/fees and books. gist and neurologist at a hospital a mere ten minutes away from This program was established with funds raised at school. We congratulate Stephan on his hard work and wish him the Steps2Cure NF road races and walks. the best of luck in his studies at RIT! Scholarship Program Application information is on the NFNE website NF Northeast News December 2013 page 11 A letter from the President of the Board of Directors Dear Friends, As this very special year winds to a close, I wanted to share with you just what a phenomenal 12 months it has been for Neurofibromatosis Northeast. NF has been making forward strides in so many ways, especially in our events which continue to grow in participation and income. As noted in the newsletter, each of our signature events has been a success this year and has helped raise both awareness and funds to find a cure for neurofibromatosis – our ultimate goal! Dr. Paul Epstein 2013 was the year that NF Northeast celebrated its 25th anniversary – a fantastic milestone for any organization – and the gala event on April 4, 2013 was attended by upwards of 300 people. It was a great success and a wonderful night that received significant media coverage, as well; the evening was a true testament to our collective strength. That strength is only matched by your generosity, which is greatly valued and so very encouraging to the patients and families who live with NF every day. By making an annual gift at this time, you are taking a bold and supportive stand. Your contribution is vital and very much appreciated. With your support, we will: • • • • • Improve awareness about neurofibromatosis through social media outlets, ad campaigns and Beauty Mark Nation; Fund scientific and clinical research; Lobby Congress to increase federal funding for crucial neurofibromatosis research; Provide college scholarships as well as funding for children with NF to attend Camp New Friends, and; Serve as a resource for patients, physicians/nurses and educators. Please help us keep this hard fought momentum going by making your donation, today. Thank you for your kindness and generosity; we could not continue without you. Sincerely, Paul David Epstein, DMD President of the Board thegivingcommon.org The Giving Common is an initiative of the Boston Foundation. Donors are invited to visit their site to read an overview of NF Northeast as well as detailed information about our programs, management, governance and financials. Secure donations may be made through our website at www.nfincne.org Please make checks payable to NF Northeast Mail to - 9 Bedford Street, Burlington, MA 01803 Administration 10.6% Fundraising 6.3% Programs 83.1% The chart above displays our functional expenses for the year 2012. 9 Bedford Street Burlington, MA 01803 return service requested At Camp New Friends, children and teens gain a better understanding of their condition, strengths and self-worth NF Camp is one of the programs that NFNE sponsors with the help of generous donors Please consider making a donation today to support our work
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