Neurofibromatosis Society of Ontario
Current board of directors
President: Angela Bobbett Please join us for our next meeting on April 28, 2013 at the
Vice President: Val Watier Days Hotel & Conference Centre, 185 Yorkland Blvd, Toronto ON.
Director: Birgit Grimberger Guest speakers will be Reggie Bibbs and Dr. Saber Ghadakzadeh!
Director: BJ Kernot
Major Non-Board Volunteers A lunch of sandwiches and desserts as well as beverages such as pop, coffee, tea and
water are included. We need to know about any dietary concerns ahead of time.
Past President: Lynne Leyland
Volunteer Coordinator: Sharon Caunan We are expecting to have a children’s room but need to know the number and ages of
Website & Technology: Steve Galbraith
children ahead of time in order to plan effectively.
Registration is mandatory to ensure we have enough seats. Please let us know by
NFSO still needs volunteers. Anyone who is interested in April 22, 2013 AT THE LATEST! While we prefer online registration at:
volunteering is encouraged to email Sharon Caunan at
http://www.surveymonkey.com/s/XS3NRLX, you can also phone us at:
email@example.com, or call or write to us. We can find
something for you to do within your physical abilities 1-888-843-6376!
and time limitations.
NFSO currently requires a minimum of one more board President’s Message
member to meet our mandated minimum. We have had a
rough year with resignations and a death within our board. By: Angela Bobbett
We need to fill this vacancy ASAP to remain within NFSO
bylaws. We will be holding an election in April to fill board The blooms will soon be coming up as spring approaches. A world full of
vacancies. We are also looking for people with secretarial colours will soon be showing. A new perspective of nature will be prominent
skills and treasury/financial experience for the positions of and just as no two flowers are alike; no two cases of NF are alike either. Each
Secretary and Treasurer. These positions are currently our case is different and each has its own story. Two of which are included in this
top priority and we encourage anyone interested who has edition of our newsletter. We also encourage more submissions for future ones.
relevant experience to let us know.
Other opportunities include future committee members,
There have been many exciting things happening lately with a new book about
coordinating and planning events, help with our biannual NF, the Retro Boogie Dance and exciting news from Dr. Saber Ghadakzadeh.
meetings, events, fundraisers, newsletters and more. If you Day-to-day hasn’t changed and NFSO still requires support from private and
have a skill or talent, we would like to find a way to use it, public donations to provide our members with a great charity, informative
and if you don’t – we are still sure you do! speakers, and meetings. With the donations we receive we have been able to
assist researchers such as Dr. Saber Ghadakzadeh with research endeavors
May tea party toward better treatments.
May is NF awareness month and the time of NF’s official NFSO is experimenting with newsletter formats and is also hoping to switch to
fundraiser, the May Tea Party. NFSO encourages each online newsletters. We understand that some of our members will need to
member to hold a tea party in support of NF. continue to receive the paper format due to not having access to a computer, or
for disability reasons. However, we hope and encourage everyone else to sign up
NFSO relies on donations from May Tea Party and other
for our email newsletter format by providing your email address in the
events and donors throughout the year to provide the
services we do to our members. We cannot continue to registration survey or when you register at the meeting. It is very important to
operate in our current capacity or provide excellent guest NFSO to be able to make this switch for environmental and economic reasons. It
speakers and informative meetings without these donations. will also allow us to send you a full-colour newsletter if printed. Your support is
We require these donations to be able to further NF appreciated.
awareness and support NF research.
Hopefully everyone is excited for spring, and will be able to join us at our
NFSO has plenty of fundraising materials for use, including meeting April 28, 2013 in Toronto! I look forward to seeing everyone, familiar
May tea party supplies. We would also be happy to send an
and new, in April.
NFSO representative to your event with an NFSO table.
Please contact us for more information.
Neurofibromatosis Society of Ontario
By: Val Watier
PeNni’s story Neurofibromatosis, my goodness what a tongue twister!
A disease, a disorder and something I had never heard
By: BJ Kernot of until 2000. I was turning 42 that year and was finally
My name is BJ but a lot of you know me better as Penni's mom. Having a child with getting some answers to why I had been living with
NF is daunting! She was sick from the day she was born, however was not diagnosed jarring, jolting, electrifying, non-stop pain. I had been
with NF until she was 8 years old. The Doctor Who diagnosed her did not know living with this pain as my constant companion for so
much about NF so he suggested I go see this new movie that just came out. It was long that it almost defined me. Walking was such an
called "The Elephant Man". WOW. Was I terrified or what! effort, as the pain was in my right calf and foot, but I
had no choice but to keep on going.
Then, a couple of days after, 2 people from Children's Services came to my house.
They informed me that my current insurance would not be enough to care for Penni When an MRI revealed I had a potato sized tumour in
as it had a $250,000.00 lifetime ceiling. So, if I was a "good mother,” I would give up my right posterior tibial nerve, I was dumfounded. In
my child and put her into foster care, or juvenile detention, as she was more than a February of 2000, I had the tumour removed at St.
handful at school. As I said, Penni was all of 8 years old then! Well, I didn't give her Michael’s Hospital in Toronto. Finally relief, and I
to the system, and Penni has received more than 4 times the ceiling in surgeries alone thought that was it and my life could continue. Not so
since we came back to Canada. Well first of all, what business was it of her doctors to fast though. It was malignant.
contact them in the first place! (I am still hot under the collar, just remembering
this). But we were fortunate to be Canadians. I was referred to the Peripheral Nerve Clinic at Mt.
Sinai Hospital where I was told the tumour would most
You see, this was when we still lived in Ft Lauderdale, Florida. My Mother had likely grow back. The word amputation was mentioned
moved us there after my Dad's death when I was 16. I was now 31. So, after 15 years to me for the first time. I sobbed with fear and the
of living and working there and one more visit from "The System" people, we moved. realization of certainty that I had no control over this.
We sold all our furniture and large items and packed everything we could fit into the Low and a couple of beholds later, I was back to square
car and moved back home! I had to say goodbye to all my friends, co-workers and one with this “thing”. In just two short years, I found
family! My mom came on the trip up with us but it was still traumatic to both Penni- myself facing the loss of my right leg below the knee. So,
Dawn and me. I had some very close friends and my Aunt Penny and cousins in in June 2002 the surgery to amputate my leg took place.
Florida but you do whatever you need to for your child. Living without a leg was a whole new world. I was very
depressed, frightened and had to grapple with coming
Just another doctor story: when Penni was just 2 years old (back in Florida), she to the acceptance that this was my life now.
would not walk on her own. Most of the time she would scream to be picked back up
and carried everywhere. So we went for another visit to the doctor (at $20 a pop How dare NF-1 intrude into my life and mess it up.
even with insurance). This was in 1974 and I was a single working mother. Our Soon I was fitted with prosthesis and I was on a path of
family doctor sent us to a specialist (at a lot of $). He ran a bunch of tests and independence learning to walk on my new leg. It has
determined Penni had Scoliosis so would be in a wheelchair the rest of her life! Well, been nearly 11 years now and functioning with my “leg”
that just was not acceptable to me! We saw the doctor again and he sent us to a is just part of my day to day life.
different specialist. $$$. He said no wheelchair, but full leg braces forever. Not
acceptable to me. Back to the family doctor, who was pretty hot under the collar Fast forward into 2012, a whole new mess of problems. I
himself by now. He had been doing some research of his own along with a friend who had been having more pain in my left hip this time.
was a podiatrist. Walking was painful. CT Scans, MRI’s and more
doctors appointments then I can recall. This time, once
They decided Penni could wear special shoes and have physiotherapy at a veteran’s again I was facing a complicated surgery due to a
hospital and at home, after they taught me how. This was all free as my dad and both MPNST in the area of my left iliac & pelvis. I was also
brothers were vets. So for the next four years I had to torture my poor daughter and in for a 9 week stay in hospital and rehab. It was a
send her to daycare in what she still refers to as army boots; first ever and we lived painful time for me, physically and mentally.
Penni finally got real shoes to go into 1st grade in. She still remembers both the pain
and the great shopping trip with mom and nana to buy black Mary Janes and I spent quite a while in a wheelchair, then taking small
sandals. Her in Florida, and went to the beach all the time. She had to wear the steps with a walker, and eventually crutches. I
army boots except for swimming. Barefoot was not even allowed. underwent 33 radiation treatments that were completed
in December 2012. I am getting around a little easier
The Moral for us parents is: You are allowed to get many second or third opinions. now and my recovery continues. Research continues
and we can only hope that somewhere out there is the
key to unlock the mysteries, the how’s and the whys of
Neurofibromatosis Society of Ontario
First, to our entire Board of Directors and Past President who volunteer their time to
ensure the charity runs smoothly; this extends to past Directors also. NEWS FLASH
I mentioned that some very exciting things
Next, to Gerry Mallory who has given much in the way of time and services, including have been happening and indeed they have
assisting with printing and mailings. been:
While we would like to thank Penni and BJ Kernot who between the two, donated $500 Nicole Porlier is about to publish her new
toward Reggie Bibb’s travel costs, we also cannot forget to thank all of our supporters who book titled, "Bumpy Roads Have Soft
have contributed financially to NFSO and to those friends and families whose donations Shoulders" Living with NF We are very
came as a result of loss of a loved one. To them, we continue to extend our condolences excited for Nicole and look forward to
and many thanks. reading her book. Nicole is hoping to be able
to share her book and sign copies for the
To our volunteers past, present and future we thank you. Sharon Caunan our new membership at our October meeting.
Volunteer Coordinator, Steve Galbraith who has been more than generous in helping with
Congratulations to Dr. Saber Ghadakzadeh
our website and online media, Sharon Cardoso who assists with the kids room in at our
who has been accepted to present his research
meetings, John Huynh who helped us plan and set-up the October meeting and to all the
about NF bone health at the International
volunteers who ran in the Scotia Bank Marathon last year. We kindly extend our gratitude
Conference of Children's Bone Health in
to those who have contributed to NFSO in all ways; your contributions do not go
June. NFSO is pleased to be supporting
Saber’s journey to the conference in the
Netherlands. Saber’s research into NF bone
Lastly we want to thank the many researchers who contribute to the NF cause, from
health has potential for future treatments and
Vedant and Saber to those we have yet to discover. Thank you, for all of your tireless
better understanding of the skeletal problems
efforts in hopes of finding better treatments and someday a cure for NF. encountered by many with NF.
BCNF is accepting applications for a
More News items scholarship to the NF Camp in Emigration
Canyon, Utah. The application deadline is
NF Canada made the sad announcement just prior to the New Year that they would be closing April 15. The camp runs from July 13 – 19,
their doors. NFC hopes to be able to reopen in the future but have been forced to close due to 2013. Campers must be 14 – 21 years old.
economic pressures. NFSO is truly grateful for the relationship it maintained with NFC The link is: http://www.bcnf.bc.ca/living-
throughout the years and for the support NFC provided to NFSO. with-nf/nf-camp/
The Retro Boogie Dance was held on March 2nd which the goal of raising $30 000 for the Sick NFSO supporter Joe Doxtater is planning a
Kids Foundation for NF. The exact tally is currently unavailable but they have raised over golf tournament to support NF. The date will
$40 000 in the last few years of hosting this event. be June 8, 2013. Please contact us for more
NFSO will be featured in the spring edition of the “Canadian Skin” magazine. This is the
magazine printed by the Canadian Skin Patient Alliance - http://www.skinpatientalliance.ca We have discovered an online community
that supports lifelong learning for those with
Congratulations to Rhonda Nasby who did a CTV News interview with Avery Haynes. Way to intellectual disabilities and support for their
go Rhonda! Word on the street is that NFSO may be getting even more hot media coverage in families, caregivers and other support people.
the near future! Stay tuned for more updates. The link is:
NFSO has developed memberships with CORD and the Canadian Skin alliance. Our goal is to
become involved with other groups to the benefit of NF and NFSO. We are also including a link to a website that
provides more information about RDSPs and
We would like to remind everyone that didn’t pay their membership dues in October that their Disability Tax Credits. The link is:
dues will become payable in April. Please ensure your dues are paid in a timely fashion. http://www.disabilitytaxservice.ca/how-to-
NFSO provides the contents of this newsletter to educate the NF community about issues and information related to
Neurofibromatosis. Unless specifically indicated, we do not endorse any treatment, program, product or service.