Social Media Works

In February of this year, we at NF Canada launched our Social Media Campaign.  Consisting of a Facebook Page, a Twitter account and a WordPress Blog, the campaign has already grown tremendously.  We expect that in the next few years, we will rely more and more on social media tools to raise awareness about NF, promote NF Canada events and even raise money.   It is an exciting time for NF Canada as Social Media is allowing us to do things that were impossible with more traditional forms of media.

One of the advantages to using Social Media is that it is a much more relevant and dynamic way of communicating with people than more traditional means such as Newsletters or mass emails.  For better or for worse, Social Media has changed the way people communicate. In the 21st Century, many (especially younger generations) expect much more than simple text; with Social Media, we are able to give it to them.  On our Facebook Page, for instance, we regularly post video interviews with NF patients and leading researchers in the field.  We also post pictures and stories.  Without a doubt, social media has enabled us to communicate more effectively with the public.

Another advantage Social Media has given us is the power to transcend geographical boundaries.  Not only is NF Canada getting our message out to Canadians, but to people all around the world!  Recently, we have been having conversations with people as far away as India on our Facebook Page, who are eager to help us work towards a cure.  The result of this is a greater sense of community, a truly international community.  People are able to connect instantly over the Internet and our social media campaign provides a perfect venue for such connections.  Thanks to Social Media, NF Canada is gaining worldwide exposure.

The numbers also reflect the success of our campaign.  Our Facebook Page, especially, has taken off, as we have over 300 fans.  This means that every day, 300 people receive instant updates on what is happening at NF Canada as well as more general NF information.  Often, these people will share the information with their own social networks and word spreads at an exponential rate.  As I have already mentioned, the Facebook Page has also provided a space for people to discuss their own experiences and to find support within their community.

Twitter has also proven to be an invaluable resource of information as well as a tight knit community of people who want to end NF.  Twitter is all about sharing: we share information and we share stories.  With over 150 followers on Twitter, NF Canada has tapped into an ever-growing number of people wanting to connect.  The opportunities are endless.

Last, but certainly not least, is our blog.  The blog has also seen a huge jump in numbers.  On its busiest day, 267 people visited the site!  The great thing about the blog is that it is fully interactive.  People are able to comment on the postings, discussions are started and new connections are made.  Last month, we were even able to recruit some new members to our Dream Team via the blog.  It is one more way to reach the community.

We hope that you are as excited as we are about the success of our Social Media Campaign so far.  If you are at all interested in seeing it for yourself, please visit NF Canada on Facebook, follow us on Twitter: @NF_CANADA, or visit our blog: http://nfcanada.wordpress.com/.  If you have any further questions about the campaign or social media in general, email me at nicklyons9@gmail.com.

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Now Part of the 2010 Intact Insurance Canadian Derby Edmonton Marathon Festival of Events!

NF Canada is now a part of the 2010 Intact Insurance Canadian Derby Edmonton Marathon Festival of events!

The 2010 Intact Insurance Canadian Derby Edmonton Marathon Festival is being held on August 21-22, 2010 and includes a Marathon, Half Marathon, 10 KM, 5 KM and Kids Mini Marathon.  For the first time, the event now includes a pledge program and NF Canada is participating.  We need your help!

Join us at this event and help to improve the lives of Canadians living with Neurofibromatosis.  From the Marathon to the 5km walk or the Kids Mini Marathon, this family focused event offers something for everyone.  There are lots of ways to spend time with friends and family, all the while raising vital dollars to help support the work of NF Canada.

Register today!  Go to www.canadianderbymarathon.ca

Every dollar counts and every registered participant counts. The charity that registers the most runners will receive an additional donation of $300 from the Intact Insurance Canadian Derby Edmonton Marathon.

Saturday August 21

The Horses at Northlands Park – racetrack

  • 10:30 am: Running Room Friendship Run (starts at Expo Centre)
  • 11:00 am: Kids Fun Zone Opens (infield at The Horses at Northlands Park racetrack)
  • 4:30 pm: Kids Marathon Mile (infield at The Horses at Northlands Park racetrack)
  • 5:30 pm: Bag Check (tent at the start/finish line)
  • 6:30 pm: 5 km Run/Walk
  • 6:30 pm: 10 km Run/Walk
  • 8 pm: Awards

Schedule – Sunday, August 22

The Horses at Northlands Park – racetrack

  • 6:00 am: Bag Check Open
  • 6:30 am: 6hr Plus (i.e. walkers)
  • 7:30 am: Marathon
  • 8:00 am: 21.1 km Run/Walk
  • 9:00 am: Kids Fun Zone Opens
  • 2:00 pm: Roads Re-open (move onto sidewalk)
  • 2:30 pm: Finish Line closes
  • 3:00 pm: Bag Check closes
  • 10:00 am-3:00 pm: Champions Brunch and Awards

Even if you choose not to run or walk you can be an active participant by sponsoring a Runner.  Your contribution will assist the runner or walker in raising funds for NF Canada.  We will follow up with an additional e-mail letting you know the names of the people who are running so you can  choose one to donate to.  The charity that raises the most money will receive and additional donation of $300 from the Intact Insurance Canadian Derby Edmonton Marathon, so lets make sure we are number one!

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Introducing Our Executive Director

I am proud to serve as Executive Director of  NF Canada working out of an office in Victoria, BC. It is a pleasure for me to work with talented staff, committed directors, and a diverse group of community stakeholders so that together we can provide effective and innovative awareness and research programs to improve the lives of Canadians battling neurofibromatosis.

Most of my work and volunteer experience over the past eighteen years has been with the non-profit sector, and for the past 13 years I have worked directly with the NF community. I have been involved as the Executive Director of the BC Neurofibromatosis Foundation for nine years and three as the ED at NF Canada.  In addition to front-line work, I have also been involved in advocacy work both from an individual and systemic perspective.

Every day at NF Canada I amazed at the adults and families who I meet or hear from who are living with NF. The challenges they face at times seem insurmountable; accessing knowledgeable health care, finding employment, struggling with pain and learning disabilities to name just a few. Yet this group of unique individuals have the courage to face the world each and every day, a world that that judges people by how they look, and this amazes and humbles me. I feel privileged to be part of a community with such an indomitable spirit.

NF Canada is a relatively new organization. We are continually striving to work more effectively at meeting the needs of people with NF. Currently we are working on numerous awareness projects and fundraising projects designed to move NF out of the shadows and increase the public’s tolerance for those disfigured by NF


I want to hear your ideas on how NF Canada can best meet the needs of those living with NF. If you have any questions or comments about NF Canada please feel free to contact me at director@nfcanada.ca
Until next time,

Desiree

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Walk For NF

Walk for NF

Walk for NFEvery step makes a difference!

Want to get involved in the NF cause? Then consider organizing a Walk for NF in your community. It is a fun way to bring family, friends and local community together to raise funds and generate awareness for neurofibromatosis.

The Walk for NF is a national program that will raise both awareness and vital resources to support individuals and families who are affected by neurofibromatosis (NF), and fund research to improve treatments and find a cure.

Affecting 1 in 3,000 births, NF causes tumours to grow on nerves throughout the body and can lead to blindness, loss of hearing, learning disabilities, skeletal defects and many other serious complications.

Take your first step today!

  • Please contact us if you’d like more information about organizing a Walk for NF in your community. This is a great way to meet new friends, get some exercise and support a great cause while instilling hope to those living with NF.
  • Plan your event: Answer who, what, where, when, why. The goal is to identify a walk location, date and time for the event.
  • Come up with event ideas: There are all kinds of walks that include a variety of activities. Search the internet and your local community for ideas or ask NF Canada staff to help.
  • Set a fundraising goal: NF Canada staff can help you set a fundraising goal.
  • Fundraise: Using the online fundraising tool you can set up donations for your walk. Walkers are encouraged to raise funds through contributions made to a personalized webpage and donations sent by mail.

For additional information on these walks, or to host a walk in your own community, please contact us by email or call toll free 1-888-986-3876.

Make a difference and take your first step today!

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Opportunity to participate in an NF1 Research Study in Vancouver

The NF Research Lab at the University of British Columbia, Vancouver,

under the direction of Dr. J.M. Friedman, has just been funded for a study

on cardiovascular health in adults with NF1.  The funding, from the US

Army, will support collaborative research between his lab and a group at

Indiana University, lead by Dr. David Ingram.

Dr. Friedman presented the results of a small preliminary study at the NF

Canada Symposium in March.  He is excited to have found a possible

explanation for the apparently increased risk of cardiovascular disease

that is seen in adults with NF1. He explained that the lining of blood

vessels in all eight people he has tested so far doesn’t respond the same

way to stress as we would expect.  Most of the eight people in the

preliminary study were completely healthy with no cardiovascular symptoms.

He also found that they had a population of cells in their blood that is

linked to inflammation.  These cells are not seen in the blood of healthy

people without NF1 but are sometimes seen in some people with

cardiovascular disease.

Dr. Friedman and his research group want to confirm these findings in a

larger group of adults with NF1 and want to collect information about

traditional risk factors for vascular disease, such as smoking.  The

ultimate question is what can be done to prevent vascular damage.  Perhaps

the same medications that are taken for high blood pressure in people

without NF1, such as statins, will also work to prevent problems in people

with NF1.  This is down the road, but the first step is to describe and

measure vascular disease in 40 people with NF1:  20 in Canada and 20 in

the USA.

The study involves a specialized ultrasound testing of the arteries in

your arm and neck, says Patricia Birch, study nurse.  “There is also a

blood test looking at all kinds of traditional risk factors, such as

cholesterol levels, as well as more exotic tests like cystatin,

homocysteine levels, and vitamin D.”  There is also an ECG (a painless

recording to get a baseline measure of the electrical activity of the

heart), and a clinical examination by Dr. Friedman.  “It is literally the

thousand dollar work up” said Patricia.  “You will get all the results

given to you and your doctor, if you wish.”

The first few people will be tested this summer.  Others will be enrolled

in the Fall.  To participate, you need to be between age 18 and 40 years

old and have NF1.  It doesn’t matter if you have known cardiovascular

problems or not.  The testing has to be done in Vancouver but there is a

travel allowance for people who live elsewhere in Canada.

If you are interested in this study or want more information, you may

contact Patricia Birch by email:  birch@interchange.ubc.ca.  You may also

phone her or leave a message to be called back:  604-875-2000 extension

5622.

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Believing in a Cure: The Las Vegas Marathon

NF Canada’s Dream Team is participating in the popular Las Vegas Marathon this December 6th and we hope you will join us.

With both a full and half marathon distance this is great event to train for. Worried about the fundraising component? We will support you along the way by providing you with your own personalized web page for online donations and fundraising tips and sample letters to ensure you reach your goals!

In return for your fundraising efforts, NF Dream Team members receive:

·         Return airfare to Las Vegas

·         Two nights’ accommodation

·         Entry fee reimbursed

·         Official Dream Team technical shirt and other incentives as you reach your goals

·         On-line fundraising tools and support

·         On-line training program and support with Coach Tyler

Check out this great video!

http://running.competitor.com/2009/12/videos/rock-n-roll-las-vegas-marathon-and-half-marathon-highlight-video_7194

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Dream Team Photos

A Little History

Tracy Gregorash spearheaded the NF Canada Marathon Team in 2007. It was a fundraising initiative for NF Canada and ran successfully for two years. In early 2009 the Board of Directors put the program on hiatus to evaluate the progam. A decision was then made to re-launch and expand the program to include other endurance events. Thus, the NF Dream Team was launched in January 2010!

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