Skip to content
maysandvar's profile image - click for profile

May Sandvar's Fundraiser:

Run for Ethan & Nemaline Myopathy

May's Photo
 

Donations currently in USD
September 20, 2016

Just an FYI the donations are in USD right now for our Canadian friends and family!  Here is a currency calculator if you need it - http://www.bankofcanada.ca/rates/exchange/dail  See more
May Sandvar

THE STORY:

Our son Ethan is 2 years old and has a rare muscle disease called Nemaline Myopathy. He is a bright, goofy and sweet little boy who works hard every single day.

NM affects all of his muscles to the point where he needs support for breathing, eating (via feeding tube) and movement. He relies on a long list of medical equipment and large health care team to support him in his life. Ethan loves getting out in his wheelchair stroller so we are doing this walk to raise funds for a cure and also to give him the experience of participating in something he at this point cannot do on his own... walk.

We hope with your donations we can find a life-saving cure or treatment to this devastating disease. Thank you so much for donating to a cause near and dear to our hearts! This is our first of hopefully many walks dedicated to finding a cure for NM.

We will be walking with Ethan in the Thrifty's Kids Run on Sunday, October 9, 2016 at 10:15 am at the Good Life Fitness Marathon in Victoria, BC, Canada.

If you'd like to participate in a walk or run to help us reach our goal, please contact us via FB https://www.facebook.com/HopeForSuperE

Kids Run if you'd like your little one to join: http://www.runvictoriamarathon.com/racing-events/thrifty-foods-kids-run/

If you'd like to register and run on behalf of Ethan and help us fundraise please join our team on crowdrise and register here: http://www.runvictoriamarathon.com/racing-events/registration/

You can learn more about A Foundation Building Strength through their website: http://buildingstrength.org/about/ and their FB page: https://www.facebook.com/BuildingStrength

Photo credit: Living In The Light of Rare Diseases 
https://www.facebook.com/livinginthelightofrarediseases/

DONATE

To This Fundraiser

$600

MONEY RAISED
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  • Diana

    $25

  • Meagan

    $25

  • Stephanie Deo

    $25

  • Anonymous

    $100

  • Grandma and Papa

    $100

  • Anonymous

    $25

  • Anonymous

    $50

  • Mackenzie Cronkite

    $25

  • Celina Nobert

    $40

  • Anonymous

    $50

  • Jeremy Evans

    $35

  • Julia & LB ❤️

    $35

  • Barb & Gary Ellis

    $25

  • Christine

     

  • Anonymous

    $20

  •  
  •  
  •  
 

12% Raised of $5,000 Goal

Fundraise for this Campaign

The Team: $600 TOTAL RAISED SO FAR

JOIN THE TEAM

Want to help Fundraise or Volunteer for this amazing Fundraiser? Join the Team

Donor Comments

Anonymous

ANONYMOUS

DONATION: $20

2 years ago

Christine

Christine

2 years ago

Barb & Gary Ellis

Barb & Gary Ellis

DONATION: $25

2 years ago

Julia & LB ❤️

Julia & LB ❤️

DONATION: $35

2 years ago

Jeremy Evans

Jeremy Evans

DONATION: $35

2 years ago

Anonymous

ANONYMOUS

DONATION: $50

2 years ago

Celina Nobert

Celina Nobert

DONATION: $40

2 years ago

Mackenzie Cronkite

Mackenzie Cronkite

DONATION: $25

2 years ago

Anonymous

ANONYMOUS

DONATION: $50

2 years ago

Anonymous

ANONYMOUS

DONATION: $25

Keep it up SuperE, May and Scott <3 2 years ago