Fundraising

Smith-Kingsmore syndrome is an ultra-rare condition, with debilitating consequences for individuals and their families. There are no treatments or cures specifically for Smith-Kingsmore syndrome, and awareness in the medical world is low.

What we have learned is that if we want research to happen, research that matters to us, we as a community have to make this happen. If we want health professionals, therapists and teachers around the world to understand how SKS impacts us, we have to make this happen. To make these things happen, we need to raise funds!

Through the generous support of our donors, we have already accomplished a lot for such a small community!

  • Through research grants, we have created mouse and fly models of SKS, that can be studied and used to test new treatments
  • We have created a Family and Medical Guide, that has been translated into multiple languages
  • We have launched a patient registry, that has enhanced the understanding of how SKS impacts patients
  • We support the only website dedicated to Smith-Kingsmore syndrome education and awareness
  • We support the biannual International SKS Family and Research Conference
The Smith-Kingsmore Syndrome Foundation runs two major campaigns each year:
  • The Smith-Kingsmore Syndrome “Sunniest Day of Hope” Campaign: this runs for the month of August, to coincide with our annual SKS Awareness Day on August 15th
  • Giving Tuesday/End-of-year giving, which runs from the last Tuesday of November through to December 31st

Information about our fundraising campaigns are posted on our socials and in our newsletter. We’d love to have you join us to support our research and awareness programming!

Many of our families run their own fundraisers during the year. This can take any form you like! No donation is too small – every bit counts! If you would like ideas about running your own fundraiser, please reach out to our Director of Development through SKSFoundation@smithkingsmore.org

We manage our Foundation fundraising and communications through a secure, convenient platform called Network for Good. Your information is never sold or conveyed to third parties.

If you wish to make an in-kind donation or donation of shares, please contact us at SKSFoundation@smithkingsmore.org and we will be happy to discuss how to make this happen!