Neurofibromatosis(NF)
encompasses a set of distinct genetic disorders (NF1, NF2, Schwannomatosis) which cause benign and malignant nervous system tumours, however, can also affect multi systems including musculoskeletal, endocrine and organs . Neurofibromatosis may cause complications such as disfigurement, bone deformities, increased risk of cancer, blindness, hearing loss and pain, just to name a few. NF is variable, progressive and unpredictable.
Symptoms range from mild to severe. Although 50% of children born with Neurofibromatosis have inherited the disorder from a parent, NF can also occur spontaneously with no family history.
encompasses a set of distinct genetic disorders (NF1, NF2, Schwannomatosis) which cause benign and malignant nervous system tumours, however, can also affect multi systems including musculoskeletal, endocrine and organs . Neurofibromatosis may cause complications such as disfigurement, bone deformities, increased risk of cancer, blindness, hearing loss and pain, just to name a few. NF is variable, progressive and unpredictable.
Symptoms range from mild to severe. Although 50% of children born with Neurofibromatosis have inherited the disorder from a parent, NF can also occur spontaneously with no family history.
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The Neurofibromatosis (NF) Society of Ontario (NF Ontario/NFON) is made up of volunteers. Our Mission is to provide support, information and assistance to families challenged by NF, work closely with clinical and research professionals who specialize in the treatment of NF, help fund research and provide information about Neurofibromatosis to physicians and the public to familiarize them with the disorder for early recognition and diagnosis. Although not everyone is seriously affected by medical problems associated with NF, monitoring for the known complications which can occur is an important part of routine healthcare for individuals diagnosed with the disorder.
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SIGNS, SYMPTOMS AND COMPLICATIONS OF NEUROFIBROMATOSIS
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Some children and teens with NF1 have difficulties with attention, friendships, and other social skills. We are about to begin an exciting new research study at the Hospital for Sick Children looking at the brain and behaviour of children and teens aged 10-16 years with NF1 during social problem solving tasks. We also want to explore whether any social problem-solving difficulties are related to 1) the child’s thinking, behavior, attention and learning, 2) parent and teacher ratings of the child’s behavior and 3) parental performance on tests of learning and thinking. In addition, we will be asking whether clinical features of NF1 (e.g., café-au-lait macules, brain abnormalities like FASI, etc.) can predict social and behavioural outcomes across ages and abilities.
To help answer these important questions, we will include different kinds of children and teens with NF1 into the study: those with NF1 and ADHD, NF1 and autism, and NF1 without attention or social difficulties. We will also include healthy children without NF1 as a comparison group. All participants will undergo brain scanning in an MRI so that we can see how the brain is behaving during the social problem-solving task. Each child and a biological parent of each child will also undergo a neuropsychological assessment to determine learning and thinking skills. All participants will receive compensation for participation and a research report detailing their performance on the standardized tests.
We hope that this information will help children with NF1, their parents, and their doctors better understand NF1.
If you are interested in learning more about our study, please contact Ms. Stephanie Azari at 416-813-6988 or stephanie.azari@sickkids.ca. This study is funded by the Centre for Brain & Mental Health (C-BMH), Centre for Genetic Medicine (C-GM), and the Sick Kids Neurofibromatosis Research Fund (NFRF).
Lynne Leyland former President of NF Ontario, Board Director and Volunteer has recently informed the Board that she is stepping down as Board Director and Medical Liaison effective immediately for personal reasons. Lynne lovingly dedicated 15 years and devoted thousands of hours of her time to NFON and the charity would not be what it is today without her. Lynne expressed that she would continue with NF Ontario as a volunteer.. Although the Board of Directors will miss her we respect her decision and hope to see Lynne and her daughter Elizabeth at many events as Neurofibromatosis Ontario continues its journey for Individuals and Families challenged by NF. We send Lynne much love, best wishes and our deep appreciation for everything. Thank You Lynne❤️
Downtown Summer Block Party, Orillia 2017
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Taste of Lawrence, Toronto 2017
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YOU CAN STILL REGISTER HERE
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SAVE THE DATES!
SEPTEMBER 8-10, 2017 NEUROFIBROMATOSIS ONTARIO HAS ORGANIZED ITS FIRST ANNUAL NF FAMILY CAMP WEEKEND AT YMCA CAMP WANAKITA ON LAKE KOSHLONG IN BEAUTIFUL HALIBURTON ONTARIO FOR NF INDIVIDUALS AND IMMEDIATE FAMILY OR SIGNIFICANT OTHER IF CHILDLESS. AGES 0-100. GRANDPARENTS WELCOME!! WE WILL BE FUNDRAISING TO MINIMIZE COST OF ATTENDING THE CAMP AND PARTIAL OR FULL SPONSORSHIP MAY BE AVAILABLE FOR INDIVIDUALS OR FAMILIES. PLEASE EMAIL fundraising@nfon.ca OR CLICK HERE IF YOU REQUIRE FULL OR PARTIAL SPONSORSHIP OR YOU WOULD LIKE TO MAKE PAYMENT ARRANGEMENTS. TO JOIN THE CAMP WEEKEND OR TO FIND OUT MORE REGISTER HERE A SNEAK PEAK OF THE CAMP CAN BE FOUND HERE. |
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OUR SINCERE APOLOGY THAT OUR NEWSLETTER IS LATE THIS YEAR. NF ONTARIO IS COMPLETELY RUN BY VOLUNTEERS AND MOST OF US WORK FULL TIME AND HAVE VERY BUSY LIVES AND FAMILIES.
MOST REGISTERED CHARITIES HAVE PAID STAFF TO DO DAY TO DAY ESSENTIAL CHARITY WORK, WHICH WE ARE ONLY ABLE TO DO DURING SPARE MOMENTS AS VOLUNTEERS. OFTEN WE ABSORB FINANCIAL COSTS PERSONALLY RATHER THAN TRANSFER THE EXPENSE TO THE CHARITY. WE ARE COMPLETELY DEDICATED TO DOING OUR PART IN MAKING A DIFFERENCE IN THE LIVES OF FAMILIES AND INDIVIDUALS AFFECTED BY NEUROFIBROMATOSIS. MOST OF US EITHER HAVE THE DISORDER OR HAVE CHILDREN, CLOSE FAMILY MEMBERS OR SIGNIFICANT OTHERS WITH NF AND NF ONTARIO IS CLOSE TO OUR HEARTS AS WE HELP THE CHARITY TO MOVE FORWARD AND THRIVE. THANK YOU FOR YOUR UNDERSTANDING AND PATIENCE. THE NEWSLETTER WILL BE ARRIVING AT YOUR DOOR SOON.
MOST REGISTERED CHARITIES HAVE PAID STAFF TO DO DAY TO DAY ESSENTIAL CHARITY WORK, WHICH WE ARE ONLY ABLE TO DO DURING SPARE MOMENTS AS VOLUNTEERS. OFTEN WE ABSORB FINANCIAL COSTS PERSONALLY RATHER THAN TRANSFER THE EXPENSE TO THE CHARITY. WE ARE COMPLETELY DEDICATED TO DOING OUR PART IN MAKING A DIFFERENCE IN THE LIVES OF FAMILIES AND INDIVIDUALS AFFECTED BY NEUROFIBROMATOSIS. MOST OF US EITHER HAVE THE DISORDER OR HAVE CHILDREN, CLOSE FAMILY MEMBERS OR SIGNIFICANT OTHERS WITH NF AND NF ONTARIO IS CLOSE TO OUR HEARTS AS WE HELP THE CHARITY TO MOVE FORWARD AND THRIVE. THANK YOU FOR YOUR UNDERSTANDING AND PATIENCE. THE NEWSLETTER WILL BE ARRIVING AT YOUR DOOR SOON.
DISSEMINATING INFORMATION ABOUT NEUROFIBROMATOSIS
In October, the NF Warriors raised over $3000 by participating at the Scotiabank Toronto Waterfront Marathon.
A BIG Thank you to our Supporters, Runners, Walkers and Volunteers who braved the rain to help raise money for Neurofibromatosis Research. Please Visit Our Research Page, To See How Your Donations Can Help Make a Difference! |
RAISING MONEY FOR NF RESEARCH
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HOW YOU CAN HELP
NEUROFIBROMATOSIS ONTARIO IS A REGISTERED NON PROFIT CHARITY COMPLETELY MANAGED BY VOLUNTEERS. WE MAINTAIN A TRANSPARENT FINANCIAL PROFILE AND ALL DONATIONS ARE DEEPLY APPRECIATED AND THOUGHTFULLY ADMINISTERED FOR MAXIMUM IMPACT AND BENEFIT FOR RESEARCH,
SUPPORT, NF EDUCATION AND INFORMATION AND TO IMPROVE THE QUALITY OF LIFE FOR FAMILIES AND INDIVIDUALS CHALLENGED BY NEUROFIBROMATOSIS. TO DONATE PLEASE CLICK THE CANADA HELPS BUTTON OR YOU CAN DONATE BY CHEQUE AT THE ADDRESS AT HE TOP OF OUR WEB PAGE.
SUPPORT, NF EDUCATION AND INFORMATION AND TO IMPROVE THE QUALITY OF LIFE FOR FAMILIES AND INDIVIDUALS CHALLENGED BY NEUROFIBROMATOSIS. TO DONATE PLEASE CLICK THE CANADA HELPS BUTTON OR YOU CAN DONATE BY CHEQUE AT THE ADDRESS AT HE TOP OF OUR WEB PAGE.
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SUBSCRIBE TO OUR EMAIL LIST ABOVE
FOR ONLY $10 PER YEAR YOU CAN BECOME A MEMBER OF NF ONTARIO.CLICK HERE TO BECOME A MEMBER
* RENEW OR PAY FOR MEMBERSHIP HERE* |
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NEUROFIBROMATOSIS SOCIETY OF ONTARIO
PO BOX 91119 BAYVIEW VILLAGE
WILLOWDALE ONTARIO M2K 2Y6
PHONE 905-683-0811
TOLL FREE 1-866-843-6376
REGISTRATION #11905 3775 RR0001
PO BOX 91119 BAYVIEW VILLAGE
WILLOWDALE ONTARIO M2K 2Y6
PHONE 905-683-0811
TOLL FREE 1-866-843-6376
REGISTRATION #11905 3775 RR0001
Thank You To Our Sponsors
Please Click on The Logo to Visit Our Sponsors' Websites
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Charity Registration #11905 3775 RR0001
All Graphics & Web Content Copyright Neurofibromatosis Society of Ontario
