Charity 802775791RR0001

syringomyelia, Chiari  Malformation & Rare Diseases

Val eventually left the NF board of directors after another health complication – another cancerous tumor, this time involving removal of part of her left hip and pelvis. Val still has regular contact with adults with NF, and cancer patients she has met over the years. She willingly listens and sympathizes with them over their health and life struggles without drawing focus to her own problems. Val has been heard to say “I wish there was more I could do for (him/her)”, “I wish I could contribute in more ways to the work of the charity”, “just let me know – I will gladly do what I can”.

 Val is fighting another medical complication, cancerous NF tumors in her lungs.  She is part of a clinical chemo trial, taking experimental drugs, since there is no cure for NF. Although the treatment is taking a physical toll on her, she still remains positive. Most recently, Val developed sudden severe cataracts, a side effect of the treatment, resulting in one eye surgery in June, and the other eye surgery this past Tues.  And still Val gives back, continuing to share her personal story in hopes it will inspire someone else to keep fighting, to have the best quality of life that they can.

Valerie Watier

Meet Val

The First Carion Fenn Award for Bravery & Courage Recipient. 


Valerie Waltier is the recipient of the First Carion Fenn Award for Bravery and Courage in 2016 presented by Mayor Dave Ryan, City of Pickering at the First Annual Rare Disease Expo.


Despite all the issues that having neurofibromatosis (NF), a rare disease that causes tumors to grow on and in the body has thrown at her – Val has not only remained positive about her own life, but has offered help and support to others. Val did not know what she had until middle age. She shouldered her symptoms as a child and young adult as simply part of who she was. 

She did not learn how serious NF could be until the surgery to remove a tumor behind her knee (which included cancer cells), was unsuccessful and they had to amputate her lower right leg. Instead of retreating into sorrow and pity, Val contacted the charity NF Ontario, attending their meetings to learn more about neurofibromatosis and to meet and network with others who also had NF.


Within a short time, Val had joined the charity’s volunteer board of directors, wanting to help provide support to other people with NF. She remained a board member for several years and was involved in event planning, fundraising, info booths and administrative duties. Val lives in a co-op, where she has been involved in many activities over the years and is also a board member. Ever since her diagnosis, Val has been spreading info and awareness about NF to everyone she encounters in hopes that others get diagnosed early and that health professionals take an increased interest in NF care.

Val has contributed articles to the charity newsletter and Facebook group as well as on her own Facebook page, including whimsical poetry. All of these posts are filled with her optimism about what life has to offer. You never hear her complain about losing her job, losing much of her mobility, and facing numerous side effects from treatment. Instead she focuses on what she can do, and enjoying time with her friends and family, including her adult children and grandkids.