NF Canada Releases New Resource for the NF Community

VICTORIA, BC- NF Canada has published a book that sheds light on the intimate struggle of living with neurofibromatosis.

 The Disgruntled Body, a book translated from an original French text, Corps chagrin, chronicles the journey of Vivianne as she battles the disorder neurofibromatosis type 1. The narrative provides no scientific information; better yet, it plunges us into the heart of the daily life of the one who is living with this condition.

 Suzanne Houle a teacher and sexologist by training, is originally from Salaberry-de-Valleyfield, where she lived for thirty-five years. She now resides in Saint-Anicet, in southwestern Quebec.

 The book is available in two versions: an electronic format for $15 and a hard copy in a paperback edition that sells for $20.

 To order the book contact the NF Canada office at 1-888-986-3876 or by email at office@nfcanada.ca

 Neurofibromatosis is an umbrella name for three distinct complex genetic disorders that share a common manifestation: tumour growth in the tissues that surround nerves. It is pronounced neuro•fibroma•tosis and is commonly referred to as NF. While most of these tumours are benign, they can occasionally become malignant. NF can also cause disfigurement, bone deformities and learning disabilities.

 About NF Canada

Founded in 2003, the organization’s mission is to ensure that all Canadians living with Neurofibromatosis benefit from support, understanding, appropriate medical treatment and the hope that a cure is on the horizon.

 More information can be found at www.nfcanada.ca

 

Contact:         Desirée Sher, Executive Director

                        desiree@nfcanada.ca

                        1-888-986-3876

 

Running For A Cure

My name is Nick Lyons, and I’ve been helping NF Canada and BCNF with their respective social media campaigns over the past couple of years.  In my time working with NFC and BCNF I have been continually inspired by the strength and courage of those affected by Neurofibromatosis.

So, when I decided to run a half marathon in attempts to raise money for a charity, NF Canada was the first organization that came to mind.  All of the money raised in this race will go toward research for a cure.  I will be wearing NF Canada gear at the race as well, which will hopefully raise awareness about Neurofibromatosis.  If you are interesting in contributing to the cause, you can visit a donation site here.  Thanks for your consideration.

Ever Felt Like Giving Up?

I have. Most  recently I had that  feeling this past Sunday at mile 9 in the Rock ‘n’ Roll Las Vegas Marathon.

Almost 30,000 people had shown up from around the world to run this race and I was there, along with our past board member Christa D.,  to run for NF Canada’s Dream Team.

As the gun went off we crossed the start line and headed down the famous Las Vegas strip. I was awestruck as I ran past Caesar’s Palace, the Flamingo hotel, the Bellagio, passing runners dressed up as Elvis, brides, Michael Jackson, and other zany characters. The adrenalin flowed as I was swept away in the energy of the pack and settled in with the 2:00hr pace group.

When I run my mind wanders and as the miles crept by I started to think about why I run and in particular why I was running this event at 7am with Elmo and Spiderman, when I could still be tucked away sleeping in my hotel bed.

I have run on and off since I was on the track team in elementary school. It has been my companion through some very difficult times- sick kids, divorce, move to a new community, loss of job. It has been and also continues  to be my reprieve from the demands of being a busy working mom. Signing up for the half marathon was about pushing myself beyond my perceived limitations and committing to a goal amidst life’s chaos. For the past twelve weeks I had trained and even run the full distance so I knew I could finish the run but then I came to mile 9.

At that mile marker I began to doubt if I would finish the entire 13 miles. I started to get discouraged as I slowed down and saw my pace group pull away. Then my mind started to stream a dozen excuses I could give people to explain why I didn’t finish. These include telling my family and friends that my hamstring injury had flared up, the travel had caused extra fatigue, I was carried away by an alien. You get the picture!

But then my thoughts drifted to some of the people I had met the day before from the Children’s Tumor Foundation. They were out there on the course  with me. There was Melissa, who had lost her leg to NF and was running, Olivia who had lost her hearing, Bob who had already run 288 marathons and was running this event barefoot, and Christa ,a working mom who in her busy schedule still found time to train and fundraise for the Dream Team.

These are the people who inspired me at mile 9 not to give up. If they had the courage to show up after battling NF on a daily basis , then I had no right to quit just because my knee hurt . (That was excuse #13)

We all have challenges to face in life. But its the people who live with NF and then add another challenge to their lives by signing up to run and fundraise to cure NF that inspired me and kept me motivated as I ran the last four miles to the finish line.

I was so glad I didn’t quit! Crossing the finish line was THE best feeling! Knowing I had the strength to dig deep when I needed to made all the desserts and wine I had given up in training, all the long miles logged in rain and snow, worthwhile…just to taste that moment of victory!  (And speaking of taste, they served beer at the finish line!)

I encourage you to join check out the events the Dream Team has planned for 2011. Don’t dream about making a difference just do it! Register today and it will be a life changing experience!

Gnomes in Your Genome!

Become an NF Champion!

By joining the NF Champion monthly giving program, you support our fight against NF. Our NF Champions provide a stable funding base that allows us to plan ahead and respond quickly to any urgent demands we may face.
 
Becoming an NF Champion is simple and risk free. On the 15th of each month a designated gift amount is securely transferred from your VISA, MasterCard, or automatic bank withdrawal. You can cancel or alter your payments at anytime just by calling the office at               1-888-986-3876         1-888-986-3876 or emailing us at office@nfcanada.ca
 
Benefits of being an NF Champion
1.    Becoming an NF Champion gives you an opportunity to provide support throughout the year in a convenient, worry-free format .
 
2.    You specify an affordable amount that doesn’t interfere with your regular monthly budget.  You can spread your contribution in convenient instalments throughout the year.
 
3.    You won’t receive regular mail appeals, saving us paper and reducing administrative costs.
 
NF Canada is extremely appreciative of those who support out organization. Once a year NF Canada will send you a charitable tax receipt that recognizes your yearly financial contributions.  We will also have a special section in the 2011 Annual Report that will recognize and thank our NF Champion donors.
 
For more information on the NF Champion program or to become a part of our monthly giving program please click here or call today.

Darrens Run

A heartfelt thanks this Thanksgiving weekend to all the Kelowna Marathon Runners who raised funds and awareness for NF today. Special thanks to Terri, Darren for their fundraising efforts and to Isaak who ran the Kid’s Run in the rain for others with NF.  There’s still time to be part of the 2010 Dream Team. Join us December 5th as we run the Las Vegas Half Marathon. Learn more here:

http://www.nfcanada.ca/html/support-nf-marathon/

The Power of Partnerships

The power of a group of people working together always inspires me. And last week in Ottawa I was inspired and awed by this strength.

With funding from the BC Neurofibromatosis Foundation and the Canadian Organization for Rare Disorders (CORD), NF Canada was able to take part in an Action Day on Parliament Hill. The message we took to the MPs was that Canada needs a framework for rare disorders including an orphan drug policy.

With Canada being the only developed country without a definition of rare disorders (rare disorders is defined in most countries as affecting fewer than 1 in 2,000) there are no incentives for the development of new drugs, guidance in conducting clinical trials and pathways to approval. The end result is that without a rare disorder plan Canadian patients lack access to clinical trials, drugs and treatments that are available in other countries.  At NF Canada we are hearing with increasing regularity that families are going to the US and Europe for care.

Working with CORD strengthens our voice as we join a national network of patient groups representing 2.7 million Canadians affected by one of 6,000 disorders. One MP we met with kept minimizing rare disorders saying so few people are affected and there were so many other items that needed her attention. She was visibly shocked to learn that 10% of her voter base is living with a rare disorder!

Most of the MPs we met were eager to learn more, some were empathetic and others were moved to action with us sitting in their office. It was exciting and energizing to witness.

I’ll admit that ‘action’ in government can move exceedingly slow, especially to an individual or family racing the clock against the progression of a disorder, but change is happening.

On October 27^th Health Canada is holding consultations on a regulatory framework for orphan drugs. On June 3^rd the House of Commons Standing Committee on Health agreed to write a letter to the Minister of Health, recommending that the Government move forward on a Canadian plan for rare disorders. Small steps that are building momentum for change.

Our participation at the Action Day and the CORD conference that followed stressed the importance of NF Canada partnering with external organizations and also with our NF affiliates. We need to work more aggressively as a collective to support people living with NF. You can help. Meet with your MP and let them know about NF and that as a Canadian you deserve equitable access to care drugs and treatments regardless if you have a rare disorder or a common one. The power of many  can bring change. Be part of the movement forward by taking action today.

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 21^st 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.

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!

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