Jonah’s Just Begun holds three annual fundraising events a year, with proceeds going to medical research. We appreciate all of our supporters who host fundraisers all over the country be it a garage/stoop sale, bunco party or a run/walk. Without your generous support we would have never gotten this far. The founders of JJB believe that raising awareness for Sanfilippo and other rare diseases is just as important as raising funds.

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

Salut, Prost, Cheers... To A Cure!

When: August 25, 2013.

Where: Stoller Family Estate 16161 N.E. McDougall Rd. Dayton, Oregon 97114

What: A wine and beer tasting event held at Stoller Vineyards. Proceeds from ticket sales and silent auction go to fund medical research.

World Rare Disease Day

Why: World Rare Disease Day is an annual observance held on the last day of February (February 28th or February 29th in a Leap Year) to raise awareness for rare diseases and improve access to treatments and medical representation for individuals with rare and genetic diseases and their families.

The sixth annual World Rare Disease Day will be held on Thursday, February 28, 2013. On this day, various activities 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.

When: February 28th, 2014.

Where: It wouldn’t be a Flash Mob if we gave exact locations. JJB’s Flash Mob will happen in and around Manhattan, NY. We would love for you to join us. Contact mari@jonahsjustbegun.org

What: “A Flash Mob is when a group of people assemble suddenly in a place, perform an unusual and seemingly pointless act for a brief time, then disperse.”-Wikipedia. JJB’s Rare Disease Flash Mob will not be pointless! We will be educating our audience that Sanfilippo Syndrome is just 1 of the 7,000 rare diseases. Of those rare diseases 50% are pediatric diseases, 30% of those children will not live past their 5th Birthday. According to the Kakkis EveryLife Foundation, 95% of the rare diseases do not have 1 single treatment.

Holiday Remit Mailer

When: Winter Holidays

Where: Remit letter in your mailbox. Or donate online.

What: Don’t know what to get your Boss’s wife for Christmas? Make a tax deductible donation in honor of her to Jonah’s Just Begun and we’ll send her a nice card saying that you have done so. Making a donation to a charitable foundation from yourself and family or in honor/memory of a loved one is a gift that will keep on giving.

Jonah’s turning 6, July 30th 2014

When: July 30th 2013- July 30th 2014

Where: Your living-room, backyard, playground or Grandma’s house... wherever your imagination takes you.

What: The perfect Birthday gift for Jonah (besides a cure.) I'm hoping that all of our supporters will "go in on it," it costs nothing!

The Gift: Create a Youtube Video.

The Premise: Jonah is obsessed with YouTube videos depicting, Lightning McQueen and Thomas the Tank Engine getting into wrecks- of all kinds. His top ten are usually the ones shot outside and involve Thomas falling into a mud pit or careening down a slide into a sand box. I attached a few examples.

The point: These videos have gone viral, with millions of hits. We want a viral clip promoting Jonahsjustbegun.org. This could be an easy and fun way to raise awareness. Parents are subjected to these videos too. If they see jonahsjustbegun.org enough times, sooner or later they will check out the website.

Directions: Grab your favorite kid, his/her Thomas and Lighting toys; friends and make a video. Important- at some point in the video point the viewer to jonahsjustbegun.org. This could be as simple as holding up a sign at the end or working the logo and website into the background. Send the video to jill@jonahsjustbegun.org and I'll post it on JJB's youtube channel.

* Children's faces are usually not shown in the video just voices and hands.


This is something that our friends from any country can do. FYI, foreign accents are a big hit.

Incentive: The producer of Jonah's favorite movie will win a $50.00 gift card to Toys R Us. The winner will be chosen on December 1st.

Disclaimer: Violent movies will be disqualified. No need to make a reference about Sanfilippo, the web address is enough.

We can't wait to see you what you come up with!

Why: Our children have an ultra rare, fatal genetic disease called Sanfilippo syndrome. So rare are these types of diseases that the big drug companies and their shareholders are not interested in spending the time and money for treatments. So the families have stepped up in order to fill the gap between science and therapy. We need your help to continue funding the groundbreaking science into gene therapy and other new therapeutic approaches that will save our son and the future generation. Jonah's Just Begun-Foundation to Cure Sanfilippo, Inc. was established in the summer or 2010 in honor of a Park Slope toddler, who was fortunate enough to be under the care of an astute pediatrician. Dr. Hai Cao noticed that Jonah's head was off the charts large and should be checked out. After further testing, our perfect little boy was diagnosed with the devastating, neuro-degenerative Sanfilippo Syndrome (aka MPS IIIC). We were told that the natural course of this insidious disease will allow the child to develop normally at first before the disease robs him of milestones learned. A mental and social regression will lead to intractable behavior and then withdrawal from his surroundings, feeding tubes, wheelchairs and death before adulthood. When we asked our geneticist at NY Methodist if this was a death sentence, Dr. David gave her qualified answer: no. The pace of medical science and technology is such that there are treatments around today that weren't here yesterday. There has been tremendous growth in genetics. So we created JJB in order to harness the science and direct it towards a cure for these children. We have located and are actively funding the best scientist's working on understanding Sanfilippo Syndrome and creating treatments such as gene therapy, which, if it works would be a cure. Progress in these therapies may have implications with common diseases such as Alzheimer's, Parkinson's and the numerous other Lysosomal Storage Diseases. We can't do it alone. Will you walk with us? Love & Lite, Jonah’s Just Begun

 

You can always support Jonah and his journey via the Jonah's Just Begun Cause page on Facebook! If you have a birthday coming up, consider creating a "Birthday Wish" in honor of Jonah's Just Begun. It's easy; follow the link to JJB's Cause page and click on "Wish."

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