From day one, Jonah’s Just Begun supporters have hosted fundraising events all over the country, be it garage sales, bunco parties, or run/ walks. Without all of their generous support we would never have gotten this far.

If you would like to host an event with proceeds going to Jonah’s Just Begun or join us in one of our awareness campaigns please contact mari@jonahsjustbegun.org.

Jonah’s Just Begun hosts two major fundraising events a year.  The founders of JJB believe that raising awareness for Sanfilippo and other rare diseases is just as important as raising funds. Below you will find a short description of some of those fundraisers and awareness campaigns.

Salut, Prost, Cheers…to a Cure!

This Wine, Beer, and Silent Auction event is held in Oregon in the beautiful Willamette Valley. Attendees get to do tastings from some of the best wineries and breweries around and feast on delicious food, all while listening to live music and lounging on the beautiful property of Stoller Family Estates. Our auction tables have something for everyone and tend to bring out the competitor in all. But the best part is raising money, to fund the science that is bringing us closer to a cure.

Holiday Remit Letter

The Holiday Remit letter is probably the easiest way to donate, you can do it on line or through the mail. It has become increasingly more and more popular to make donations in someone’s name in lieu of a gift. You can make a tax-deductible donation in the name of any one you choose and we will send a nice card saying that you have done so. Making a charitable donation for your self or in honor/memory of a loved one is a gift that will keep on giving.

World Rare Disease Day

World Rare Disease Day (http://www.eurordis.org), is an annual observance held on the last day of February to raise awareness for rare disease and improve access to treatments and medical representation for individuals with rare and genetic diseases and their families.

On this day, various activities will take place in the United States, Europe, Russia, Japan and elsewhere around the world. Jonah’s Just Begun will be participating by organizing a global Flash Mob. This is a fun and easy way to bring awareness in your area. If you are interested in participating or having a flash mob of your own please contact: mari@jonahsjustbegun.org.

On rare disease day, you’ll find JJB’s Jill Wood lobbying on Capital Hill, during the Rare Disease Legislative Advocates (RDLA) Summit meeting. Advocates from across the country join together in solidarity to urge our legislators to support our efforts to fund and find treatments for our loved ones suffering from rare diseases. http://rareadvocates.org

Chalk it Up for JJB!

A fun way to raise awareness and get the kids involved is to Chalk it Up! All you need is some sidewalk chalk and some creativity. Write out a “Jonah’sJustBegun.org” masterpiece and don’t forget our heart logo. Chalk it up in the park, in the woods, on your sidewalk, anywhere you won’t get in trouble, and tweet us, tag us on instagram, or post it to our facebook page. The more people see it, the more they will want to know about it.