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NEUROFIBROMATOSIS SOCIETY OF ONTARIO
THE NFSO NEEDS YOU
- PAGE 1 -
BI-ANNUAL MEETING
SCHEDULED FOR
OCT 26TH
- PAGE 3 -
FALL 2014 NEWSLETTER
THE NFSO IS TAKING
PART IN THE STWM
ON OCT 19TH
- PAGE 4 -
2ND ANNUAL CHARITY
GOLF CLASSIC FOR NF
SET FOR OCT 4TH
- PAGE 7-
FALL 2014
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IMPORTANT MESSAGE FROM THE NFSO BOARD OF DIRECTORS
Due to some recent changes in the membership of the NFSO Board of Directors, we have
some fantastic opportunities for you to join our team and make a difference.
!
Being on the NFSO Board of Directors provides an opportunity for you to work with people
sharing a common goal to raise awareness and money for NF support and research.
!
Currently available positions include:
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• President
• Vice President
• Secretary
• 4 additional board members
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The new members must be in place by the end of the next general meeting - October
26th, 2014.
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The NFSO has been advised that if we do not get the required board members that the
NFSO will have to close its doors.
!
This charity has been of great value to so many over the years, we need you to ensure we
can continue.
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If you have any questions or would like to volunteer, please send an email to
[email protected] with a brief bio telling us about yourself.
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Regards,
!
The NFSO Board of Directors
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NEUROFIBROMATOSIS SOCIETY OF ONTARIO
FALL 2014 NEWSLETTER
A Message from the President…
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Hello to all of you. Thank you for all the support you, our general members, have given
us. I appreciate the patience you have shown regarding our changes in Leadership in
the last six months.
Having said that, I need to inform all, that I will be leaving the board as of our October
Semi-Annual Meeting, due to Health issues. We will be having another election during
that meeting to bring our Board of Directors for NFSO up to the 12 directors needed.
Penni-Dawn will be leaving the board as well in order to take care of me. Julie Skinner
has already resigned. Therefore we will only have 5 members.
!
Please help us keep it going! We will be 30 years of age in October of 2015. One year
from this next meeting. It has taken a lot of very hard work by a small group of people
over the years. Let us make that a large number of people for the next 30 years,
Okay?
!
Now on to upcoming events. Man, you have got to check this out! Marathons and
Golf and Sales and our Bi-Annual General Meeting, oh my! We are a busy group! So
please check the section on Upcoming Events and the blurbs written for them. If you
have questions please go to our website (same address...nfon.ca or call
1-866-843-6376) and they will be answered ASAP.
!
To all our members with access to a computer please give us an email address to send
our newsletters to. With close to 400 members, the cost of snail mail is very expensive!
But not to worry, if you don’t have email access, we’ll still send it snail mail. Fewer
paper copies produced = more money saved. Savings for; Lawyer fees, office
supplies, Fundraising, etc. So be a sport and switch to email newsletters. Thank you so
much!
!
I would like to say Thank you to Lynne Leyland, Angela Bobbett and Nicole Goudreau,
our most current past President's on the Board of Directors. Your time, effort and Love
for this Charity has been noted and appreciated beyond our ability to say a proper
Thanks! So, Kumbya.
!
And to all our past and current Board members, a huge Thank you for your time and
service that we know was given from Love. Love of a family member with NF or a
friend or even love of yourself as well needed when one feels alone with this rarely
spoken of medical condition called Neurofibromatosis. Let us get the Word out that
this does exist and people are trying to do something about it !! You are never alone!
We are always here for you. If you need information or just a friend to talk to, please
contact us at anytime. Now read on and hope you enjoy.
!
Sincerely
!
Ms. B.J. KERNOT
NFSO PRESIDENT OF BOARD OF DIRECTORS
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NEUROFIBROMATOSIS SOCIETY OF ONTARIO
FALL 2014 NEWSLETTER
5th Annual Retro Boogie Night for Sick Kids
Semi-Annual NFSO Meeting
Our fall meeting is scheduled to take
place on Sunday, October 26, 2014
between 9:00 am to 4:00pm.
!
It will be held at:
Holiday Inn Toronto-Yorkdale
3450 Dufferin Street
Toronto, Ontario
M6A 2V1
The 5th Annual Retro Boogie Night for Sick Kids was held
at the West River Event Centre on April 5th, 2014. This
event is always a night to remember as the charity dinner
and dance is a 70’s and 80’s themed extravaganza that
brings out the boogie in everyone
!
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Please confirm your attendance
before October 5th by contacting
NFSO by:
!
Phone: 1-866-843-6376
Email: [email protected]
Completing the following online survey
at:
www.surveymonkey.com/s/Y2M3LLR
This year 375 people in attended and supported
Neurofibromatosis research at Toronto’s Hospital for Sick
Children.
!
!
Over $40,000 was raised that evening, and much credit
goes out to the charity committee: which consists of
•Angelo and Ivana Virgilio
•Annamaria and James Grassa
•Rocco and Susanna Vessio
•Chris and Claire McDonald
•Cindy and Maurizio Lauriola
!
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Children will have the opportunity to
play in a supervised area.
If you require overnight
accommodations, please contact the
hotel directly at 416-789-5161.
Financial assistance will be considered
on a case by case basis. Please
contact us for more information.
!
Please ensure to mention the event
name in order to receive a discounted
rate which will only be available for
bookings prior to 21 days of arrival.
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NEUROFIBROMATOSIS SOCIETY OF ONTARIO
FALL 2014 NEWSLETTER
The STWM Charity Challenge
!
The NFSO is thrilled to announce that we
will be one of the official charities
participating in the Scotiabank Toronto
Waterfront Marathon (STWM) this fall! This
is a great opportunity to get your friends
and family involved with the NFSO and to
help promote NF awareness within our
community.
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What are you waiting for?
Everyone can participate on this day whether it is volunteering, walking or running a 5K race, or
running a half or full marathon!
Receive a FREE “Team NFSO” t-shirt as our “thanks” to you for joining our team!
Reach a fundraising goal of $250 or more and we'll reimburse your registration fee!
If you haven't joined Team NFSO yet here’s how to register. Registration is just two simple steps:
STEP I) Register for the RACE EVENT:
1. Go to the STWM website: http://www.torontowaterfrontmarathon.com
2. Click on REGISTER
3. Follow the instructions to register either online, by mail or in person.
!
!
STEP II) Create Your Own Personal NFSO Online Fundraising Page
1. Click TRANSFER on your confirmation screen. EventsOnLine will transfer your contact information
over to Artez Interactive.
2. Click OK. You will be taken to the 2014 Scotiabank Charity Challenge Fundraising Page.
3. Congratulations! You are now ready to fundraise online!
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Don’t forget to join “TEAM NFSO”!!! With your help we can reach our goal of raising $10,000!!!
Pledges of $20 or more will receive a tax receipt!
For more information visit our charity profile at:
http://www.torontowaterfrontmarathon.com/en/charity/nfso.htm
Volunteers Needed
The NFSO is looking for volunteers to help on the morning of the marathon. Volunteers will
help at a water station along the race route distributing water to the racers.
!
!
We need 20 volunteers in order to have a NFSO station to promote Neurofibromatosis
awareness.
Please contact a member of the board of director or email [email protected] to lend your
support.
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NEUROFIBROMATOSIS SOCIETY OF ONTARIO
FALL 2014 NEWSLETTER
A New NF Hero
!
On Sunday July 13th, 2014 Frank D’Urzo completed the Toronto
Triathlon Festival in honour of Neurofibromatosis. His goals were
to raise awareness for NF as well as raise $10,000.00 for NF
research at Sick Kids Hospital. He was motivated to do this by 2
year Sebastian Bonavota who was diagnosed with NF at 16
months of age. Sebastian is the son of Vincenzo and Laura
Bonavota who are good friends with Frank.
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Membership Updates
In an effort to generate an
electronic membership
database, the NFSO is in
the process of updating our
records.
!
As a result, we would ask
you provide the following
information:
!
Name:
Address:
Email:
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This was Frank’s first attempt at a triathlon and he was very
successful. He overcame the 1.5km swim in Lake Ontario, the
40km bike ride along the Gardiner and Don Valley Parkway and
finished his 10km run across Lakeshore with pride.
This information can be
sent via email to
[email protected] or to
the following address:
!
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Frank exceeded all of his goals. During this
campaign, several thousand people
became aware of Neurofibromatosis and
over 300 people made donations to surpass
the $15,000.00 mark. “I am still absolutely
astonished at the results we achieved. This is
what happens when plenty of amazing
people get together for a common good.
Exceeding the $10,000.00 amount was one of
the most overwhelming experiences in my
life”. Frank’s efforts were rewarded with an
interview on CP24 which can be seen on
YouTube.
!
For more details visit www.frankdurzo.com or
YouTube Frank Durzo
NF Society of Ontario
2004 Underhill Count
Pickering, ON
L1X 2M6
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Communication Policy
Change
Please be aware that all
future communication and
newsletters will be sent
electronically unless a
written request is sent to the
NFSO indicating that you
would prefer to receive
communication by mail.
!
Written requests can be
sent by email to
[email protected] or to
the following address:
!
NF Society of Ontario
2004 Underhill Count
Pickering, ON
L1X 2M6
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NEUROFIBROMATOSIS SOCIETY OF ONTARIO
NF and Tough Mudder
On Sunday, July 13, I travelled with a group of 10
wonderful teammates to Upstate New York to
complete my 3rd Tough Mudder. In thinking of the
strength, bravery, and confidence it takes to
complete each Tough Mudder, I decided to
dedicate my 3rd Tough Mudder to my youngest
brother, Timmy Corson, and raise some awareness
surrounding Neurofibromatosis (NF).
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Since my brother's NF-1 diagnosis in 2011, I have
met many remarkable people affected by this
condition, and I admire them. There is an existing
community of understanding, empathy, and
support. They endure
hundreds of doctors
appointments, MRIs,
specialist appointments,
invasive surgeries,
procedures, and pain. I
look up to their incredible
strength and resilience and
hope that I can be half as
strong.
!
During Tough Mudder NY,
my team proudly wore shirts with "#NFwarrior" on
the back to show our support to those with NF.
Those with NF are the warriors, and our challenge
of completing the Tough Mudder was a
representation of their strength.
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I would like to create a movement. A reminder of
where true strength and challenge exists, and I'm
challenging everyone to join this movement.
Hashtag your own feats of strength with
"#NFwarrior" to raise awareness for the condition
and to show support to those with NF. Let's show
the world, as a community, that there is no
shame or weakness when it comes to NF. The
bumps and spots are battle scars. It is a sign of
strength. It is a sign of victory. Those with NF are
warriors.
FALL 2014 NEWSLETTER
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The NF Registry
Dr Saber Ghadakzadeh would like to invite anyone
with NF to contact him to fill out a questionnaire for
the Ontario NF Registry.
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This Registry will help doctors assess aspects of NF that
need more research, prove the need for better
healthcare funding for NF, and create better
understanding of the many needs of those with
Neurofibromatosis, hopefully leading to improved
treatments.
!
!!
More information will be provided at the meeting in
October. See page 3 for details.
The NF Registry can help doctors with meeting the
many needs for those with Neurofibromatosis
NFSO Board of Directors:
President - BJ Kernot
Treasurer - Annamaria Grassa
Media & Fundraising Coordinator - Birgit Grimberger
IT & Media Coordinator - Chris McDonald
Media Coordinator - Claire McDonald
Event Coordinator - Jame Grassa
Research Coordinator - Penni-Dawn Kernot
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Much Mudd Love,
Sonya
#NFwarrior
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NEUROFIBROMATOSIS SOCIETY OF ONTARIO
FALL 2014 NEWSLETTER
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NEUROFIBROMATOSIS SOCIETY OF ONTARIO
FALL 2014 NEWSLETTER
Raising NF Awareness in the Niagara Region
It was such a pleasure for me to have the opportunity
to fundraise for The Neurofibromatosis Society of
Ontario, and to be able to raise money for the people
who are living with NF type 1 and type 2. I became
interested in this cause because NF has hit close to
home for me with my son going through testing for NF
type 1. I not only wanted to raise money, I also
wanted to raise awareness to educate people about
this condition. It was a great experience working with
my family and friends, and as well as the people of
this wonderful organization, as without them, the
fundraiser would not have been a success. It
consisted of a yard sale, bake sale as well as a raffle
draw, and the total amount raised was $300.00. This
was my first time organizing such an event, and it was
a great learning experience for me. I will continue my
fundraising efforts, and I look forward to my next
event in the spring.
I sincerely want to thank everyone who donated yard
sale, or bake sale items, the volunteers, and to the
people of Beamsville who came out and supported
our efforts.
The NFSO would like to thank Adrienne for helping spread NF awareness and raise
funds for the NFSO.
!8
NEUROFIBROMATOSIS SOCIETY OF ONTARIO
FALL 2014 NEWSLETTER
NFSO Member Profile - Lynne Leyland
Many people probably know me from my involvement with the charity including 6 years
as president of the board. Most probably do not know my NF story. Our daughter
Elizabeth was a spontaneous mutation resulting in NF1. She was diagnosed at age 4 ½
after I noticed a neurofibroma forming on her side. (She had the requisite café au lait
spots for as long as I can remember – but no doctors had paid any attention to them.)
Elizabeth was diagnosed at age 2 ½ with moderate to severe autism. She remains on the
severe end of the autism spectrum. This is actually unusual as it is far more common for
people with NF to have high functioning autism. As part of her autism or her NF or simply
in conjunction with them, Elizabeth also has severe intellectual impairment, is medicated
for anxiety, has hyperactivity and attention issues, hyper mobility disorder and significant
language impairment. (She also has very poor vision – but that is not caused by her NF).
Elizabeth has been fairly lucky with her NF so far. She has a plexiform mass in her face
and another on her chest wall – but they have remained fairly stable over the years. We
have seen minimal changes in Elizabeth’s NF beyond what would be considered
expected growth, even though she has gone through puberty. Elizabeth has internal
tumors in various areas near her spinal column, but thankfully none that have required
any surgical intervention. She continues to develop more neurofibromas. To date,
although there are a number of other findings on her brain MRI – there are no NF tumours.
Despite all her needs, Elizabeth is a mainly happy, active and mostly healthy young
woman. She will be turning 18 soon, so we are in the process of transitioning from Sick Kids
hospital in Toronto to adult medical services. This is a bit of a scary process as we will go
from having one hospital that dealt with all her needs to attending various clinics at
multiple hospitals. There is a “good to go” program at the hospital that assists parents in
understanding the many things they should be doing as their child prepares to leave the
children’s medical system. Since she will be 18 soon, we are also losing all the funding
programs available for children and are applying her ODSP and getting on the wait lists
for adult funding programs.
My daughter’s NF and autism are what prompted me to become active with NFSO and
with Autism Ontario. Over the years, I have been involved in board positions, awareness,
charity events, guest speaking, networking with others, fundraising, parent support
groups, and attending many workshops. At age 6, my daughter became my only job. I
run in-home developmental programming for her, create social and life skill programs
and hire and supervise the workers that implement the programming. Since I have been
fortunate to attend many workshops that parents who work outside the home might
never have the opportunity to be part of. I want to share the information I have learned
from them. Email [email protected] if there is a topic or question that you are looking for
information on.
Over the years, I have met many people that have NF, are parents of a child with needs,
or are staff, workers or volunteers with various agencies and companies. I am grateful for
the friendships I have formed, and the ideas and support I have received.
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NEUROFIBROMATOSIS SOCIETY OF ONTARIO
FALL 2014 NEWSLETTER
THANK YOU!
Contact Us!
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There are so many different kinds of people to
thank: the people who support NFSO
financially, people who support us with their
time and/or talents, business that assist us in
our work, the volunteers who run the charity
and its events, the doctors and clinicians who
go above and beyond to improve treatments
and hasten research with Neurofibromatosis
who make the effort to educate those around
them about NF and NFSO.!
Neurofibromatosis Society of Ontario!
2004 Underhill Crt!
Pickering, ON!
L1X 2M6!
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1-866-843-6376!
905-638-0811!
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www.nfon.ca!
www.facebook.com/groups/nfontario!
@nfontario!
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Your generosity enables the NFSO to better
educate the public, share information, support
research and assist people who have
Neurofibromatosis and their families. !
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As a volunteer run charity, we are only as good
as the people who assist us. Even small
donations or completing a small job for us
makes a difference. Thank You!
!
- Disclaimer -!
The NFSO provides information 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.
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