Receiving a Joubert Syndrome diagnosis can be difficult for many families.  Often, a newly diagnosed family will attend one of the JSRDF family conferences shortly after receiving their diagnosis and find the experience life changing.  It is in this place that many decide that they would like to make it their mission to ensure every family that wishes, can attend a conference and so begins their fundraising effort.

The JSRDF currently has two fundraising initiatives:

  1. Conference Fund – This includes conference scholarships which provide families with financial assistance to attend a conference when in need.  In addition to the scholarship program, this fund also enables continued conference cost decreases to families and significant content and activity enhancement.
  2. General Fund – This general fund is intended to continuously build and grow the JSRDF and it’s existing programs.  This fund will be the seed for upcoming new family support programs.

Hosting a fundraiser can take a lot of time and be a great amount of work. Let us help you!

We hope that you’ll take comfort in knowing that your efforts are being used to push forward the research being done on Joubert Syndrome and allowing the JSRDF to support families and build even bigger and better programs to continue to do that.  

How can you help?

  • Make a donation at or mail a check payable to the Joubert Syndrome and Related Disorders foundation to:
         1415 West Ave.
         Cincinnati, OH 45215
  • Plan a fundraiser in your area.  See below for fundraising ideas.
  • Participate in an annual JSRDF fundraising event.
  • Make a Tribute Gift – Support the JSRDF by making a donation in honor or memory of a loved one.  Or, celebrate a special occasion by making a donation in place of a gift for a birthday, anniversary, wedding or other event.
  • Increase Your Impact Through Corporate Matching. Many employers offer corporate matching programs to employees that chose to give to a charitable organization.  Check with your Human Resources representative to find out if this is an option in your workplace.
  • – Amazon will give 0.5% of sales that are generated from using the link here and choosing The Joubert Syndrome and Related Disorders Foundation
  • Encourage friends and family to donate or sponsor you in an event.
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Plan a Fundraiser

There are endless possibilities for what kinds of fundraisers can be planned.  If you are in the process of planning a fundraiser, we encourage you to get in touch with the JSRDF Fundraising Committee.  The committee will help to provide you with toolkits for certain types of fundraisers, marketing materials and social media tips for reaching the largest possible population.

Below are ideas for fundraisers that have been successful in the past.

  • Tee Shirt Fundraiser – Get the toolkit from your fundraising committee!   Tee Shirt Fundraiser Toolkit Information 
  • Wristband Fundraisers – Get the toolkit from your fundraising committee! – COMING SOON!
  • Golf Tournaments
  • Summer Dinner Party – advertise a suggested donation to cover your cost, you may be surprised at how many individuals will give much more!
  • Group Funding Websites (ie: GoFundMe, YouCaring, etc.)
  • J4JS (Jog 4 Joubert Syndrome) – Commit to participate in any type of endurance event, run, walk, triathlon, etc. and encourage your family and friends to support your efforts with donations to the JSRDF in your honor.  You can participate in any endurance event. Below you’ll find our list of suggested events based on those that others have enjoyed.  *Coming soon – Create your personal fundraising page from the JSRDF website!  There is no minimum fundraising requirement for this.
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Participate in an Annual JSRDF Fundraising Event

Race for RARE

We are proud to announce the First Annual Nationwide Virtual 5k Run/Walk benefitting The Joubert Syndrome and Related Disorders Foundation, Race for RARE.

Join us on October 7, 2017!

The Race for RARE is a Virtual Race.  Run it on your treadmill, around your block or get a group of friends and family together for a group run!

*All proceeds will benefit The Joubert Syndrome and Related Disorders Foundation.  A registered 501(c)3 charity.


$31k In 31 Days –  COMING SOON!

Details coming soon!

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Earn FREE Conference Registration and Hotel Fees - COMING SOON!

Details coming soon!

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