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 5 km 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 canadianderbymarathon.ca.

Every dollar counts and ever 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.

Huntington Society Canada is spearheading this Coalition to introduce legislation to prevent genetic information from being factored into decisions impacting a person’s life (e.g., employment/hiring practices, life insurance, mortgage eligibility, health and disability insurance).

We would like to hear from you if you have been denied employment, insurance coverage or benefits based on your genetics or family history. Please send your story to us. Confidentiality is protected and the examples will be summarized anonymously. To learn more about the CCGF and to take action visit the website.

What do you want from me? Why do you hate me? Why are you so cruel? You inhabit me…like an intrusion. You are there inside me. You attack me from within. You defeat. There are glares…mine and those of others. There are injuries…there is fear, there is anguish. Risk of death. Do you want to kill me?

I know battle, I know resignation. I know days of victory; I know days of defeat.

My body…you make it ugly. Every day, you attack. Relentlessly, you injure. Always, you hurt. How can I get rid of you?

When I was young, I was unaware of your presence… Naive, I could not begin to think that you were getting ready for a slow, interminable siege. Young people have no weapons.
Then, when I was becoming vulnerable, when my conscience was awakening, at the most precious time of my adolescence, you launched your first assault…without warning, without my having had time to protect myself. This wasn’t loyal. I defended myself to the best of my ability. I found myself a weapon: an identity. You were forcing me to be different! By attacking me, you were serving me my identity on a silver platter. I was different from the others. I was me. Finally, I had somewhat found myself; I gave myself a certain importance. I was making do with your presence. I was not too angry at you.

There were flirts and fancies…and then love, the love of my life. He was everything. He loved me. I loved him. You bothered me a little…but whatever. I would have liked to be more beautiful in his eyes, in my own eyes…but he loved me above all else. The start of your siege did not overly weaken the fort.

Then came the child… I will be giving life. I feel beautiful. I feel like a woman. I feel like “Life.” And then, while I was putting all my attention, all my energy on this, at the very moment when I was almost forgetting you…you attack once again. You strike me down. You make me become even uglier. I must once again defend myself…I then choose Beauty! Yes! Amazing, isn’t it? You must have been surprised. You make me look almost monstrous…and then I find this incredible, unassailable beauty in the gesture of giving life, in this new and so intimate love that is slowly germinating inside me, in this privilege that life is granting me.

You are desperately trying to destroy me. You are forcing me to resist, to survive, to Live. An Identity. Beauty. I think that I am defending myself quite well. Oh! Inside me, your invasion is worrying me, inflicting injuries, leaving scars…but I am still standing and getting stronger all the time.

Making love with my love, the one who shares my life… Passion, tenderness, pleasures… Injuries, shame, death. A hand travelling, caressing, tender and loving. A hand that also hurts, reminds, injures and kills a little with every caress, because it is shameless…knowing the secret and seeing my ugliness. The insupportable suffering caused by this intimacy, this nudity before the other. The other, my love, loves me, wants me. I give myself…and hold back a little. Give everything? Let go? I can’t. Giving love, giving pleasure, giving tenderness…yes. But giving ugliness… Too difficult! There is the shame. I try… But this hand that touches…who knows… Oh! Loving hand, don’t be too insolent, don’t tell me my ugliness. Be discreet. I love your presence, I love your warmth and the pleasure that you give, but I’m angry at you for sharing my secret. I’m angry at you for infiltrating my heart. I’m angry at you for violating my soul.

Other men… Their proximity? Velvet and harshness; desire and fear; joy and sorrow. Their gaze? Attracting, invading and penetrating; humiliating and hurting. Scraping my heart.
Children… Curious, inoffensive, such bearers of truth. They hurt sometimes, without really realizing the reach of what they mirror back to me: “Did you ever touch a toad when you were young?”

The mirror… Attempted murder. You hurt every time. It is your daily weapon, and me, the idiot, I use your own weapon to hurt myself. The mirror is killing me.
But I’m not done resisting. I continue to defend myself. I want to live.

You, you keep attacking. Like a tank, you invade me without respite. What do you want from me…do you want me to abdicate? Could there be a secret weapon that I have yet to find? For so long, you have inhabited me; for so long, you have hurt me while at the same time pushing me forward. The discoveries that your presence led me to make throughout my life are invaluable. If you left me now…

It’s true that I still sometimes dream of having another skin…a beautiful wrapping paper, of being beautiful on the outside like on the inside. Useless dreams, impossible dreams, dreams for another lifetime.

My dreams are hungry!

Life, on the other hand, whets my appetite!

If you are interested in purchasing a copy of Suzanne’s book, please contact us. Corps Chagrin is available in French only.

Neurofibromatosis (NF) is an umbrella name for three separate genetic disorders that share a common manifestation - tumour growth in the tissues that surround nerves. NF can result from a spontaneous genetic alteration or is inherited from one or both parents. While most of the tumours are benign, they can occasionally become malignant. Symptom manifestations and their severity vary greatly in all three forms of NF, making each form a distinct and complex genetic disorder. NF is equally prevalent across the world and is not limited by any gender, racial, social or economic boundaries.

The three Neurofibromatoses are chronic, progressive disorders that pose different challenges at different stages of life. Living with a lifelong disorder requires a person to manage not only the physical symptoms, but to find ways to cope with new circumstances that may impact psychological, social, economic, and quality-of-life issues. These psychosocial issues affect not only the individual with Neurofibromatosis, but also family members and other loved ones.

The Three Types of Neurofibromatosis

• Neurofibromatosis Type 1 (NF1)
  The most common genetic disorder affecting approximately 1 in 3,000 to 4,000 births
• Neurofibromatosis Type 2 (NF2)
  A less common form, affecting approximately 1 in 40,000 births
• Schwannomatosis
  Appears to occur as often as NF2, affecting approximately 1 in 40,000 births

NF Type 1

Neurofibromatosis Type 1 (NF1) is the most common single gene disorder to affect the human nervous system and affects approximately one in 3,000 to 4,000 births. NF1 causes developmental changes in the nervous system, skin, bones, and other tissues. Half of the cases of NF1 result from a spontaneous genetic mutation, meaning there is no known cause, while the remainder of cases are inherited from one or both of the parents. NF1 occurs with equal frequency in males and females and has been identified in all ethnic, social and economic groups around the world.

NF1 affects each person differently. Some people are quite mildly affected and may not experience any impacting symptoms of the disorder while others are more severely affected and require increased medical treatment. Each individual with NF1 - even those in the same family - can be affected in a completely different manner. Overall, it is estimated that about half of the people with NF1 are moderately to severely affected. While it is very unlikely that any one person diagnosed with NF1 will experience all of the associated complications, it is difficult to predict the severity or progression of the disorder in any individual case.

Download Fact Sheet for more information on NF1

NF Type 2

Neurofibromatosis Type 2 (NF2), also called Bilateral Acoustic Neurofibromatosis, is very different from NF1 and is a much more rare genetic disorder, affecting about one in 40,000 births. Alterations in the NF2 gene cause Neurofibromatosis Type 2. The onset of NF2 is unique to each individual. Some may develop their first symptoms during their late teenage years or in their early 20’s. A few individuals develop symptoms in childhood, while others live without any signs of the disorder until their 40’s.

NF2 is characterized by benign (non-cancerous) tumours that grow on the cranial and spinal nerves. There are few visible signs of NF2; however, there are symptoms that can indicate the presence of the disorder. NF2 often causes slow-growing, benign tumours to grow along the eighth cranial nerve, which leads from the brain to the inner ear. These tumours are called acoustic neuromas or vestibular schwannomas. The most common early symptoms are hearing loss, ringing in the ears (tinnitus) and loss of balance caused by tumours growing on the nerve from the ear to the brain. If tumours are growing in other parts of the brain, signs and symptoms vary according to location and can include seizures, changes in vision or sensation and fluid build up in the brain.

Download Fact Sheet for more information on NF2

Schwannomatosis

Schwannomatosis is a rare form of NF that has only recently been recognized. This disorder appears to occur as often as NF2 approximately one in 40,000 births. Individuals with Schwannomatosis develop multiple schwannomas on cranial, spinal and peripheral nerves, but they do not develop vestibular tumours and do not lose their sense of hearing. Schwannomas are tumours that come from the cells that form a protective sheath around the body’s nerve fibers. They are usually benign and when possible, are surgically removed. They usually appear as a single tumour and rarely will they develop into multiple tumours. Affected individuals usually have much greater problems with pain than with neurological disability, although as with all forms of NF, schwannomatosis may vary greatly between patients. Many individuals with schwannomatosis go several years before the source of their pain is realized because they have few or no neurological symptoms.

Download Fact Sheet for more information on Schwannomatosis

The Future for NF Patients

There is no cure for NF and to this day, the Canadian medical community is largely uninformed and has difficulty making an accurate and timely diagnosis. Treatment strategies for NF are still in the trial stages. Our goal is to bring awareness and education to the medical community so that together, we can face the future of Neurofibromatosis.

It is difficult to predict the severity or progression of NF in any individual case. It is important to recognize that despite varying challenges, most people with NF can live long and rewarding lives.