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JONAHS JUST BEGUN-FOUNDATION TO CURE SANFILIPPO IN's Fundraiser:

Jill, Jonah's mom is turning the BIG 40! Help her keep her sanity!

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BENEFITING: JONAHS JUST BEGUN-FOUNDATION TO CURE SANFILIPPO IN

EVENT DATE: Jun 10, 2013

THE STORY:

My 40th Birthday Wish.... I wish for help!

But not like you’re thinking. I want to hire an employee for Jonah’s Just Begun. I’m serious. This is my birthday wish. Jonah’s Just Begun has been in operation for three years now, and we’ve grown too big for just one person to handle.

It’s really very exciting. Our science is moving full speed ahead. With the added help of Jonny Lee Miller’s support, we have already doubled what we raised last year. But It’s never enough. For JJB to bring just one of our treatments to market, we need millions!

I’m drowning in work!  Still, the idea of using JJB funds for anything but scientific research scares me. We spend huge sums financing our research projects, and because all of this money comes from donations, I am never certain that we will raise enough to make our next payment. It’s a double edged sword; I can’t raise more funds for science unless I hire someone to help me raise funds.

So this is my wish: I want to hire Mari-Elaina full time (no interns for JJB). The work Mari does and the support she provides to JJB are vital. For the past two years, she has given her free time to furthering our cause. She helps with public relations, seeks out endowments, makes sure our website is updated, and basically does whatever is needed to ensure JJB functions. For my birthday, I want her to quit her job and come work for us. Having Mari 100% on board will not only help to increase JJB's visibility and outreach, it will also save my sanity and give me the strength to see this through to a cure.

If you’re wondering what it is that I do for JJB, read this article. It describes in detail what it is that I’m up against and how far we still have to go.
 

ORPHANS FIND A HOME

After years of neglect by pharma companies,

RARE DISEASE TREATMENT is coming into the limelight

LISA M. JARVIS, C&EN NORTHEAST NEWS BUREAU


The article is 4 parts, be sure to click through all the segments.
Part 1: Orphans Find A Home
- Part 2: Small Audience, Large Payoff
- Part 3: Patients Advocate For Change
- Part 4: Regulations Are Cause For Concern
- Sideshow: Faces Of Rare Diseases

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