June 1, 2022 — Press release from Hydrocelphalus Canada

June is Hydrocephalus and Spina Bifida (H&SB) Awareness month in Canada. It is estimated that 120,000 Canadians are living with hydrocephalus. 85% of those impacted by hydrocephalus also have spina bifida. Hydrocephalus Canada (HC) bridges research, awareness and innovation with advocacy, education and support to empower people impacted by hydrocephalus and spina bifida to experience their best life. To highlight the conditions and celebrate those living with the conditions HC and other Spina Bifida and Hydrocephalus organizations across Canada encourage our communities to raise awareness through various
activities and fundraising campaigns.

Hydrocephalus is often referred to as “water on the brain.” It can develop at any time of life and is caused when there is a blockage of cerebrospinal fluid (CSF) that cushions the brain and spinal cord. The blockage causes pockets in the brain to swell. Treatment is typically brain surgery to insert a shunt system that absorbs the excess fluid and redirects it to another part of the body to be reabsorbed. If left untreated it can cause varying degrees of brain damage. People impacted by hydrocephalus, even after treatment can have various challenges, including chronic headaches, seizures, extreme fatigue, vomiting, incontinence, as well as decline in academic and professional performance. Spina bifida is a neural tube defect (NTD) that develops when the neural tube is forming in babies. A portion of the neural tube does not develop or close properly damaging nerves and the spinal cord. The impact on a person can range from mild to severe, partial or total paralysis below the damaged area. Loss of sensation in legs and feet, bowel and bladder challenges, learning challenges, as well as difficulties with fine motor skills, vision and hearing can occur. Hydrocephalus is often a secondary diagnosis in people with spina bifida. Both conditions can have ongoing, life-long medical challenges.

Ready, set, go!
Get creative this June and register your very own Spirit Wheel Walk Run (SWWR) Awareness and Fundraising event! A SWWR can be any type of activity, such as an online Facebook fundraiser, lemonade stand or in-person walk/wheel/run in your favourite park or local neighbourhood. The fun part is you get to be creative with your event and invite your family and friends to join you in raising awareness and funds for the H&SB community! Check out Troy’s Trail https://www.facebook.com/SSMTroysTrail and see how they have been raising awareness in Sault Ste. Marie as they celebrate 11 years of making a difference in their community.

This year Canada, we are challenging you to join us in all the fun! Jumpstart June with our Steps Challenge in support of June Awareness Month. Provinces are competing against each other to see who can rack up the most KMs collectively and earn bragging rights. We encourage you, your friends, community members and family to get moving for H&SB! You can register as an individual or a team for a chance to win a prize for the most KMs in your province. Make sure to submit your photos on our socials with #SWWR

Connect with us this year
Take part in our Hugs for Hydrocephalus and Smiles for Spina Bifida photo/video awareness social media campaigns. SB&H organizations in Alberta, Quebec and Ontario are participating and encourage everyone to submit photos/videos of individuals hugging or smiling with their family
members/friends that live with spina bifida and/or hydrocephalus. Email submissions to info@hydrocephalus.ca Each entry will also be included in a random prize draw.
#hugsforhydrocephalus #smilesforspinabifida

To keep the excitement going, HC will be lighting up iconic Canadian landmarks in honour of June Awareness Month. For the first time ever, Niagara Falls will be illuminated on June 6th and the CN Tower on June 13 in Hydrocephalus Canada’s shades of blue. Danny Lamb, HC Ambassador will be streaming live on Instagram from Niagara Falls on June 6. The High Level Bridge in Edmonton will be lit up green on June 3.

Anyone with questions about spina bifida, hydrocephalus or how you can support any of these causes, is asked to visit Hydrocephalus Canada at www.hydrocephalus.ca, or contact us at:

Hydrocephalus Canada
16 Four Seasons Place, Suite 111
Toronto, Ontario M9B 6E5
1 (800) 387-1575 (416) 214-1056
info@hydrocephalus.ca