| PRESIDENT'S REPORT - Mary Jane Bowyer
The highlight of 2005 for the NFSO was the marking of its’ 20th Anniversary with a Medical Symposium ‘Neurofibromatosis – Through the
Medical Maze’. There was no better way to bring awareness and support our society. You still have
an opportunity to support the Society by renewing
your membership, remembering us in your annual
donations and volunteering your time. But, 2005 comes to a close marking an end to our celebrations but not the momentum. We all became better people and advocates to further our commitment to help the 10,000 Canadians with Neurofibromatosis. And demystify the misconception of NF. I was so touched by the many acts of kindness shown at the symposium.
This will be remembered as a highlight in my life.
I will attempt to thank those responsible for this
successful event but I am sure that I will unwillingly leave someone out and for this I apologize in advance.
Thanks to everyone that attended our symposium.
Your presence was appreciated. We had people
traveling here from great distances and countries;
thank you for taking the time to be part of our
20th Anniversary Celebrations. Our presenters
were among the finest in the world and the information shared was the highest caliber. We had a perfect opportunity to share stories,
experiences and treatments with each other and learn from another’s experience. The NFSO would like to thank all those individuals who shared their personal story. Happy memories of this weekend will remain with me for many years.
It was wonderful to have the support of not only our Ontario members but NFCanada as well.
Many connections were cemented and great foundation was built. We always had the support
of BCNF, ANFQ & NFSO; but to welcome input from two additional provinces and the expertise of Peter Bellermann to draw on made it a very rewarding NFCanada meeting as well. New
representatives were welcomed into our national
support group. I would like to thank each and every member of NFCanada for supporting our symposium and attending. Your presence was
much appreciated.
I was so humbled and excited about the support that was shown for the NF2workshop. Members Elizabeth & Roberto; encouraged many individuals with NF2 to attend. A special thanks to Dr. Vincent Riccardi, Dr. Mai MacCollin and Dr. Abhijit Guha with his research team; for presenting at the NF2 workshop. When all was
said and done there were over 20 people with NF2
as well as their family and friends. What a true expression of loyalty and dedication to each other.
Thank you for being a very important part of our
20th Anniversary Celebration; it would not have been the same without you.
The Teen/Young Adult Workshop was a wonderful
opportunity for the future members of our Society
to join in a relaxed format and share their concerns
about living with NF. Special thanks to Dr. Patricia Parkin, Helen Maj and Christopher Trevors from
Sick Kids for supporting these young people and
share your knowledge with them. It was very touching to see them exchange contact
information & join together at the Banquet Dinner. True friendships were formed between them and they feel less isolated and alone in the world. These young people will be our future
NFSO leaders.
Another workshop that was well attended was the
Parents of Children with NF. A big thank you to Dr. Patricia Parkin, Dr. Dorota Crawford, Dr. Nicola Keyhan & Dr. Abel Ickowicz from Sick
Kids and Dr. Jeanette Holden from Kingston for your presentations to our parents. Many myths and misconceptions about NF have been addressed and you armed these parents with the knowledge they will need to help their child develop to their full potential.
Lastly we had the Adults with NF1 Workshop which featured Dr. Ab Guha with his research team, Dr. MacCollin, Dr. Philip Wyatt and Dr. Julie Righter; all helping individuals have a better understanding of the complex world of NF in their
lives. Knowing that we are not fighting this disease
alone & have the strength of research to draw on that one day we will find a cure.
Peter Bellermann, our constant supporter and long
time friend from the Children’s Tumor
Foundation; joined Dr. Riccardi and Dr. Mac Collin on Sunday for our Key note presentation.
Thanks to all of you for sharing your time and words of wisdom and encouragement.
Additional thanks go to those many people that
donated items to our Silent Auction. The range of gifts donated again were spectacular, we had
something for everybody. Thanks to Fay Drew and
her family for supervising the auction and draws.
The Brotherhood Band for the entertainment at our
Banquet; once again you rose to the occasion,
thanks guys and girls. To Gabi von Gans for the
photographs taken and special limited edition Daisy
Prints presented. You and the band really do offer
unconditional support. Thanks to the Sheppard
Division Rangers & Pathfinders that offered Child
Care. Thanks, Larry Alpin and Mark Drew for
doing the airport runs, and Lynne Leyland for all the
errands she ran throughout the weekend and
creating our memory display board, her husband
Bill for all the wonderful treats for the children from
his work place. Thanks, to Mary Harris for joining
us on Sunday, Sharyn Devine for leading the Sunday
Worship, Marg Muise for cutting our Anniversary
cake, my friend Tami Harrison for organizing the
Hospitality Suites and my mom, Bernie Casey for
everything she has done to help me, listing them
would be too lengthy. The Radisson Hotel once
again has risen to the occasion and welcomed us
with fine attention to detail, in both
accommodations and banquet services. Thanks, to
Aben Graphics Ltd. for all your help and patience
with my ideas; putting them in order and providing
us quality work. To Ron, Chantelle, Andrew and my
mom for all your patience and understanding when
I was too busy to care for my family. Thank You!
You are all in my heart.
Speaking of ‘in my heart’, I can’t forget to mention
the members that have passed away leaving such an
impact on our Society. Key members such as our Past
President, Stuart Drew and Directors Elaine Boyd,
George Foley, Alan Callery and many members; how
much they would have enjoyed this special
Anniversary celebration. A big part of who we are
today is from their leadership and guidance.
Thanks to my fellow directors, Gladys Hamilton,
Birgit Grimberger, Sharon Kightley, Marcela
Uribe, Shriefe Woods and Lynne Leyland for all
their help and support over the last two years. We
have made great gains in our tenure and with
your continued efforts we will set new objectives
and goals making us better prepared to help us
become stronger advocates for the Society, create
an awareness and reach our goal to fund research
and find a cure for neurofibromatosis.
The Annual General Meeting was very low key this
year only focusing on our elections. Thanks for the
support of our membership for voting most of us in
again to represent you. Thanks to Marcela Uribe,
retiring from her years as a director, and to Penni Kernot for joining our team of directors.
‘Awareness’ is the word I heard repeated again and
again throughout the symposium and to do this we
need to reach out beyond our comfort zone and create more support groups, contact our local media for interviews and personal stories. I cannot emphasize this enough. Awareness will lead to fund raising and fundraising leads to research and
research leads us to a CURE!
In this newsletter are comments made by
individuals that attended our Symposium, I was
very touched by the feedback and wanted to share
their messages with you. Thanks for taking the
time to send us your thoughts.
Your new director positions for 2006-2007 are as
follows: President, Mary-Jane Bowyer, Vice-President
is Lynne Leyland; Treasurer, Gladys Hamilton and
Secretary, Shriefe Woods. The committee person for
Membership is Birgit Grimberger, Fund Raising and
Publicity, Sharon Kightley and Web site is Penni
Kernot. We hope by designating directors to specific
positions will enable us to serve our membership
more efficiently. Please contact any one of them if you need assistance in any way. We are only as strong as
you allow us.
We have tentatively set some 2006 dates but have not
had them confirmed yet. At present we are hosting
a tea party at the Radisson Hotel, Toronto East on
April 30th and hope to jump start May ‘NF
Awareness’ month. We are planning a ‘Teddy Bear
Picnic’ on Sunday, June 25th and our Annual General
Meeting is set for Sunday, October 29th, 2006.
I know that my report is quite lengthy and much to
read over the busy holiday season, but please do sit
back and have a cup of tea and enjoy all the
wonderful, kind words that were shared with us. I
can’t tell you how much they meant to me.
I know that many of you did not have the
opportunity to renew your annual membership;
please do so now as all memberships are due in
October at the meeting. I have included a reply
envelope for your convenience. A donation to the
Society makes a wonderful Christmas gift for a loved
one and it’s tax deductible.
Have a very happy and healthy holiday season! Take
care of yourself. I am only a telephone call away.
Continued happiness to all into 2006!!
Watch us Grow! MJB
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| ‘NF - Through the Medical Maze’ (What people had to say...)
To Mary-Jane and the NFSO organization, a heartfelt
congratulations from all of us at NFCanada. It was a
meaningful and highly successful weekend for all
involved. Your months of planning paid off many
times over. Even veterans like Peter Bellermann and
Dr. Riccardi were highly impressed
- Daniel Fournier, NFCanada President
Wow! Thank you so much for all the very hard work
put into making this symposium such a huge success.
The speakers were wonderful. The days perfectly
organized. The food was great.
- Ann & Larry (members)
Mary Jane you've done a wonderful job - you and
your executive are to be commended on your
accomplishments. If there was an 'Oscar' award for
the hardest working volunteer, you would, clearly, be
the winner. Thank you for the kind words...It was my
pleasure to be there - I can't tell the story of the
meeting without tears - I was so touched by the
kindness and the numbers in attendance.
- Mary Harris, NFSO founder & member
Mary-Jane, thank you for your hand-written note
about the time, thoughts and feelings we shared in
Toronto recently. It was my privilege to be a modest
part of a big undertaking. The success of the weekend
reflects primarily your skills and prowess. I am
grateful that we’re on the same team. VMR
-Vincent M. Riccardi, MD, (Key Note Speaker)
The Neurofibromatosis Institute
I very much enjoyed attending the conference,
meeting with the parents & the teenagers in a
different format. Many parents have told me how
much they enjoyed the conference & how
important it was for them.
- Patricia Parkin, (NF Clinic – Sick Kids)
I just wanted to add my congratulations also on
what a wonderful meeting you had. I really
learned a great deal. I have attended many medical
meetings, but usually meetings about NF2. This
gave me an opportunity to learn about NF1, and I
found it very interesting.
- Marie Drew, Canonsburg, PA
Where do I start? Thank you so much for everything.
And I mean everything. I had an absolute fantastic
time. The whole symposium was such a learning
experience for me and I met some great people
there as well. To partake in such a great
"Symposium" was a thrill.
-Betty Ann (member)
I sincerely thank you for a most wonderful weekend!
Truly, that was an experience I will never forget. As for
the symposium itself, your organization and choice in
speakers was wonderful. I thoroughly enjoyed every
workshop I attended and wish there was two of me so
I could have been everywhere at once. But the most
amazing thing for me was the forum provided for so
many, who individually or as a parent or loved one,
live with NF1 & NF2. It's hard to believe within 48
hours so many new bonds were formed. I left Toronto
a little teary, wishing we could all spend more time
together. It's difficult to put into words how it
affected me... very positively though. You provided
an atmosphere of understanding and acceptance, a
sense of family, and that is very special.
- Susan Wood, BCNF & NFCanada
The Symposium was the only topic of conversation
all the way home and for the rest of the evening and
much the next night. My head was going to explode
because of all the information and meeting so many
people affected in some way by NF was great (and
with all the food, my head wasn’t the only thing ready
to explode!) When I heard early on Saturday about
the “NF family” I smiled because if Jen and I see
someone with NF we always get excited about
another “brother” or “sister” but the friendliness and
the attitudes of the weekend made it seem even more
like a family. I am already excited about the next
meeting and you can bet that if it is at all possible I
will be there.
- Mark (member)
Just want to say thank you very much for everything
you did...It was a wonderful gathering. We met alot
of fantastic people. Thanks for every thing.
- Pam Innes, NF Alberta & NFCanada
Thanks for all the hard work. The Symposium
was truly amazing & definitely worth the
trip....very informative
- Christine (member)
What an awesome job you did. The weekend was
great, socially and informative.
-Jane (member)
Where does one begin, I want to extend my
congratulations on a job well done. The
symposium was really great. The captioning for the
hearing impaired was wonderful to see. I studied
sign language last year and was thrilled to be able
to communicate with some of those who had
hearing loss. From my conversations they were all
thrilled to be there and feel less isolated and alone.
I met so many people who were attending for the
very first time, so many people affected in so many
different ways, but with a common trait,
COURAGEOUS what a blessing to meet such
awesome people. Watch US Now
- Rhonda (member)
I just wanted to let you know the NF2ers that did
attend explained this was the BEST symposium
they had ever attended. And they have attended
many NF symposiums around the world; however,
this was the greatest. They were sooo touched with
all the stories of challenges, triumphs, and
perseverance. What made it fantastic were the
personal stories you asked members to share, the
captioning, and NF2 content.
- Elizabeth (member)
I am so impressed by the high quality of the
meeting you organized and ran. Outstanding!
- Peter Bellermann (presenter)
First let me congratulate you and others for
organizing a superb meeting and also to thank you
for having us.
- Ab Guha (presenter)
Congratulations on the success of your conference!
- Jane Keeler, (Sick Kids)
Sorry I had to leave before saying good bye to you.
I couldn't find you. Hope things do well for the
rest of the weekend. I enjoyed my time at the
NFSO Symposium.
-Philip Wyatt (presenter)
I would like to thank you for all the hard work in
planning and executing the symposium over the
weekend. It seems we all have to be our own
advocates. Many thanks for all your hard work
and effort.
- Lynne (member)
I want to thank you for all your efforts in putting
together an excellent 20th anniversary medical
symposium/conference this weekend. We found
the speakers very informative and helpful. The
personal stories were also very touching. The
conference was very well organized and I'm sure it
must have been a monumental task to co-ordinate
all of the logistical details and arranging the
fantastic speakers. Our congratulations for making
this such a special and memorable event.
-Sandy and Emma (member)
Thank you for your kind words--I must
congratulate you for a wonderful conference. It
was a pleasure to participate.
-Mia MacCollin, (Key Note Speaker)
As my first experience at an NF Symposium, I
found it overwhelming at first. A lot of the science
went right over my head. Fortunately, many of the
researchers went over some of the same material,
giving me a chance to grab it the second time it was
zooming by. I also was touched by the personal
strength of many of those with NF. All in all, it
was a very illuminating weekend and I am very,
glad that I came to it.
-Ron Turley (member & NFCanada)
I had a wonderful time. It was probably one of the
most influential and inspirational weekends I have
ever encountered. Listening to stories of others
with NF, not feeling so alone, made me realize that
much more on what we need to do, and why we
are doing it. You did an incredible job. I can only
hope, when we have one out here in Alberta, that
we will have the success you did.
-Cathy (Alberta & NFCanada)
Thank you so much for a wonderful weekend.
The food, rooms and meeting were great. The
people were the best. I will keep in touch!
-Olive, Judy & Nancy (members)
It is amazing to think that it is 20 years since you
started all your hard work. I am very impressed
with the folks you have lined up. I see Ab Guha
from time to time because he is the Alan Hudson
Chair and I will keep in touch with him about the
Neurofibromatosis story in Toronto. Thank you
for thinking of me.
-Alan R. Hudson, OC (founding member)
I think the weekend was the best! The Society has
come so far. Thinking back to our first meeting, I was
overwhelmed then; just as I am now. Who would
have thought we’d have people join us from Quebec,
Alberta, BC, Atlantic Provinces, and many from the
USA. Our great speaker list says it all. I think the
symposium was well attended and everyone left
feeling energized! Keep up the good work and in
another 20 years we can do it all over again. A
GREAT JOB, WELL DONE!
-Marg (founding member)
Since my return from the conference I feel I am a
changed person. It was the first time that I had ever
seen/been around another person with NF. A VERY
POWERFUL TIME. I have attempted to explain the
weekend to others and really have no one word for it.
I think it is just something that you experience.
-Kim McGinn (Atlantic Provinces, NFCanada)
I've never met another group with the LOVE, CARE,
DEDICATION, and DRIVE you have. No words to
say how FANTASTIC the Symposium was.
-Mark (member)
Thank you for including me in this special event. It
was a wonderful (and humbling) experience. It gives
a different meaning to what we do here in the lab to
help these patients.... a number of parents approached
me after the talk with good questions about genetic
testing...It was also great meeting all of you.
-Dorota Anna Crawford (Presenter-Sick Kids)
It is a great moment of a lifetime to have shared
with you the 20th anniversary of NFSO and your
symposium "Neurofibromatosis: Through the
Medical Maze". We also had the privilege of a
meeting of NF Canada on the Friday night, time
to realize the energy of more provinces to link
together and give more awareness on NF
everywhere and eventually to find a cure.
As for your symposium, what a big organization
with educational workshops and presentation
events where every presenter share their expertise
on four special workshops: NF1 adult, NF2 adult,
Parents of Children with NF & Teens.
It was also very special to hear some people tell
their own stories and realize how they deal with
NF. It is always important, after hearing this, to
attend workshops and realize how the medical
system is trying to be more understanding and
helpful with more awareness on the subject.
We had pleasure to meet marvelous people coming
from everywhere in Ontario and it was special to meet
francophones also. As for the pleasure part (silent
auction, banquet, hospitality suite...), it was all great
and wonderful.
-Lise (ANFQ President, NFCanada member)
I can not thank you enough for such a wonderful,
informative and heart warming experience I had
the honour to be attending. The medical expertise
and the overall family support to all attending were
never to be forgotten, at least by myself. The
unknown is so hard to deal with; events like this
make it easier to cope.
-Sister Gabriella (Laura) member
This symposium has changed me. I'm not sure if that
is the correct word. I cannot believe the power a few
words spoken can have. I made so many new friends
it is unbelievable. Becoming a Director, and having
people come up to me and tell me my words meant
something to them, BLEW... ME... AWAY! My selfworth
was up lifted, so high I do not know what to
do... I am starting a chapter near me and doing
fundraising! My goal is $10,000.00 I challenge
anyone to match or beat that... Don't think I can
raise that much? 'Yea? Watch Me.' Thanks to all who
came. With the NFSO I don't feel so alone, and for
that my gratitude is forever there.
-Penni (member & new director)
Awesome event! Very well planned and
informative. I had a hard time deciding which
sessions to go to as they all looked good. Give
yourselves a pat on the back! :)
-Stephanie (member)
The meeting in Toronto was a huge success by my
standards. You should be very proud of yourself. I’ve
already heard about it from multiple quarters
stateside. Thanks for the opportunity for making
progress in dealing with NF.
-V. M. Riccardi, the Neurofibromatosis Institute, Inc.
(further correspondence received)
Thank you for the kind words of encouragement.
-Mary-Jane, Gladys, Birgit, Sharon, Shriefe,
Lynne, & Penni (NFSO Directors)
|
| CHOLESTEROL DRUG MAY REVERSE GENETIC DISORDER
A cholesterol-lowering drug reversed learning and
memory problems in a mouse model of a genetic
disorder that affects 100,000 Americans.
The findings, reported this month in Current
Biology, were so impressive, scientists said, that the
Food and Drug Administration has agreed to allow
clinical trials in patients with neurofibromatosis-1
to go forward immediately.
The genetic disease strikes one in 3,500 people,
causing growths and tumors. Half of patients also
have learning, attention and memory deficits.
The medicine, lovastatin, has a long track record in
lowering cholesterol.
In the latest study, Alcino Silva and colleagues at the
David Geffen School of Medicine at UCLA raised
mice with a gene mutation that causes
neurofibromatosis-1 and exposed them to learning
and memory tasks with and without lovastatin.
With the medicine, the animals had no problem
learning a task that they had trouble doing without it.
Silva said he suspects the implications could include
all forms of learning disabilities.
"We are incredibly excited," Silva said. "This is the
first good news in treating NF-1. There is very little
we can do. It is a happy day."
Those who work with human patients are hopeful.
"It's great to see the studies go forward in patients,"
said Kim Hunter-Schaedle, chief scientific officer of
the Children's Tumor Foundation, a nonprofit group
that raises money for research. Three separate clinical trials, including one at UCLA, are set to begin.
Lovastatin belongs to a family of drugs called statins,the most common cholesterol-lowering compounds.
Silva's lab first discovered that a genetic pathway
called Ras was disrupted by the NF-1 mutation. Ras
regulates cell growth and NF-1 disrupts this pathway. The result is that neurological tumors can run wild in patients.
In the brain, Ras also regulates how brain cells talk to one another. When Ras is impaired, learning and
memory suffer.
This article was posted on Wed, Nov. 09, 2005 On the BB on the
CTF website. |
| BRANTFORD SUPPORT GROUP REPORT FOR 2005
It's hard to believe that Christmas is just around the
corner, soon we will be enjoying the holiday season
with family and friends.
Our next meeting will be held on Sunday November
27th from 1-4 pm. I will be sharing information from
the Medical Symposium with those who were unable
to attend.
The 2nd Annual Bowling fundraiser held in April was
enjoyed by all; we raised $1000.00 which was
donated, along with other money raised, to Dr Guha's
Research Lab. I look forward to the 3rd Annual
Bowling Event and hope to surpass this year’s total.
We enjoyed our third Annual Family Picnic and
welcomed three new individuals and their families to
our group. The picnic is always a fun time and the
children seem to enjoy the games and getting to know
one another.
For more information about the Support Group,
please contact Rhonda Nasby @ 1-519-751-7460 or vicnrhondo@rogers.com
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| OTTAWA SUPPORT GROUP REPORT FOR 2005
2005 is almost over, with snow falling and Christmas
so close, not to mention that the New Year is less than
a month away. We all have many things to be thankful
for, the starting and continuance of our support group
is one of them. NF Ottawa Support Group has been
up and running for a little over a year and it seems like
it was just yesterday. These meetings have helped us
to raise awareness, fundraise (donated to the NFSO
for our combined goals) and most importantly, meet
others in our area with NF.
To celebrate the season, we will be having a potluck
dinner/meeting on December 11th, with Christmas
craft making and discussions on 2006 Fundraising
Events and meeting scheduling.
Recently having attended the 2 day Medical
Symposium, our attending members came away with
plenty of good information, met many old and new
friends. Expressions of thankfulness where heard from
all at the chance to attend and the opportunity to meet
fellow NFSO members/family throughout Ontario
and further. The only complaint was that with so
many excellent speakers, they were hard pressed to
decide which one to pick.
Many thanks to the NFSO Directorate for all the
hard work and accomplishments achieved over the
last 2 years and most recently, hosting ‘Through the
Medical Maze’. To Mary Jane Bowyer…all we can
say is “you’re the best” and we are very fortunate to
have you with us!
For further information or if you wish to join our
support group, please contact me at the below email
address or phone number.
May the best days experienced in 2005 be your worst
in 2006!
Happy Holidays Everyone!!
Shriefe Woods
NFSO Director, NF Ottawa Chair
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