Follow by Email

Saturday, November 26, 2011

We Won $25,000 dollars, thanks to all of you!

The online voting contest with Chase Community Giving was a real nail biter. JLK started out strong then we steadily dropped, held and then dived during the last hour of voting. I was frantically emailing, texting, instant messaging, and blogging. We ended up at #81 out of 100. The last 30 or so foundations were neck and neck. Our sister foundation Team Sanfilippo won $25,000 as well. Unfortunatley Ben's Dream and Will Luthcke SF foundations didn't make the top 100. My good friends Hannah's Hope won $25,000, but friends with the ISMRD foundation fell out of the top 100 at the last minute too.

FYI there were 6 Dog rescue charities that won $400,000 between them. 14 Animal rescues ranging from frogs & bats-tigers & eagles that shared $350,000. There were 4 children's rare disease foundations that won $100,000 all together. I think this makes a very interesting topic of conversation. And no I'm not upset with the animal foundations, somebody has to stand up for the dogs and frogs.

I think if the general voter new that there were a handful of foundations fighting for their children's lives, they would have voted for us too. What it boils down to is awareness, everyone knows that there are neglected animals out there. Not everyone knows about Sanfilippo, Giant Axonal Neuropathy, or IP36 Deletion (all ultra rare diseases- killing children.) We need your help in spreading the word. Our small Mom & Pop foundations are changing the course of science and finding treatments for our children, so that others will not have to suffer through the loss of a child. (BTW any foundation who raises more then a million a year could not compete in this competition)

Many have raised the point that our foundations shouldn't be in the same competition with animals and choir bands. Picture a voting contest of a 50 ultra rare fatal disease competing for $. Yikes! A PR nightmare (Pepsi dropped the medical category from their "Pepsi Challenge") How do you choose which disease deserves the most funding? You don't. That's why we must raise the question to our lawmakers and big pharma. What about the neglected orphan disease afflicting our children? The FDA's Orphan Drug act is not working.

I know the online voting thing is annoying and it's a bit tacky, but hey it works. These contests are something that parents with kids that are too sick and in need of constant care can contribute to. I can't thank all of you enough for helping and supporting. I was touched by how many friends that I hadn't seen in years or extended friends of family members who through themselves into the contest and solicited votes on a daily basis. Thank You! Now that you are all seasoned voters, we will hit the ground running for the next contest. JJB will be in Chases' system for the next contest and we better be in the top 5!

It has been nonstop work admits runny noses and kidney stones at our place. Jonah and I finally got over our sinus, ear, and viral infections just in time for Thanksgiving. Poor Jeremy passed another stone a few weeks ago, then had a big stone Lazar blasted last Wednesday. On Thursday we all recovered and ate our body weight during our intimate Thanksgiving feast.

Holiday fundraising events are at a sketchy standstill. Cross your fingers I'll be able to secure our walk at Prospect Park for March. Totally last minute, but the only weekend they had available (beggars can't be choosers.) We're working on a Holiday remit letter. Talk about sketchy... I had to go out to East NY's United Postal Service facility to register JJB mail as a nonprofit. Why is the USPS so hard to work with, (rhetorical question.)

Next week I'm off to Switzerland for an MPS/ Sanfilippo conference. Traveling back and forth to Europe every 2-3 months sounds thrilling, but when you sit in a hotel conference room for a long weekend and only see the sights from a cab ride, it isn't in the least bit glamorous.

As taxing, expensive, and emotionally draining as it is, at the end ot the day it's worth it! My friends and scientists will all be there. It's a huge opportunity for our group to be face to face with our investigators and talk out our strategy, collaborate and hear where the science is at the very moment. It's astonishing how much has taken place since our last meeting in June. The president of Lysogene will be there, hopefully we will hear some good news about the 4 kids in the type A gene therapy trial are doing.

Our group will be able to touch base with Alexey, Brian and Daniel and get an update on all of our projects. All together there are three new approaches that our group would like to start funding, that's aside from the three treatment approaches that our group got started in the last year. Isn't that amazing?! Meanwhile we're still waiting on Pfizer/Zacharon to announce their clinical trial. Pfizer will be there and will present their work. Pfizer better tell us what we want to hear! We're sick of waiting, while our kids die.

The day before the Chase contest started I attended a conference in the city. I almost didn't attend, I was so stressed out about my work load. I new it would be stupid to pass up an opportunity like this. Little did I know that the conference would help take our foundation to the next level. I really went because I knew Francis Collins would be there, the director and head honcho with the NIH, Kathy Buckley the founder of Team Sanfilippo and Chris Hempel (Niemann pick C) of the Addi & Cassi fund were going.

I missed meeting Francis, but I'll catch him another time. Meeting Kathy and Chris, fellow Tiger Mom's was priceless. A surprise was my friend Dean Suhr of the MLD foundation who also advocates for RARE, was there too. What a lovely surprise! Dean is from OR as well. The world of the Ultra Rare disease community is well.... rare. I think I have just about met all of my counterparts. Keep reading the best part of the conference is yet to come.

The conference was unique in that it brought professionals together from every aspect of our mission together. From advertising, money men, product managers, FDA, NIH, drug companies you name it someone was there to represent. A handful of professionals were hand picked to give advice on a one on one basis to the attendees. I had a booklet of all the people recruited to give advice and their bios. I spent about an hour looking at the book, then went into t "Partnering for Cures" website and requested meetings with a few people, which I literally just picked from a hat.

I had no idea what to expect from my meetings. I have learned to never pass up an opportunity, leave no stone unturned. ok so... I chose a money manager to talk to. She immediately wrote me back and said she didn't care what I wanted, she had to meet me. Her son's Hebrew name is Jonah her maiden name is Begun and her wedding song was "We've only Just Begun." The result from the meeting was two interviews with her philanthropic clients. Where I am to pitch my case, in hopes of a substantial donation. I have no idea when these meetings will happen, but I'm not ready. So hopefully not until after the Holidays...yet I need the funding now..ugh.

The other life altering meeting was a scientist named Sean Ekins, who was there on behalf of a company that he freelances for CDD. Sean wears many hats and is a Jack of several trades: science, technology, writing/editing and business. I just can't get over my luck. I took Sean by surprise too. He has been thinking about how he can accelerate "faster cures" and I guess I just gave him the reason to make the leap from his day job.

I forget how few Tiger Mom's there are in comparison to "industry" workers. I always assume that everyone knows who Chris Hempel or Lori Samms are. Everyone I meet in the industry is always pleasantly surprised to learn that the parents actually do exist. I think that's a problem, more parents need to make their voices heard.

Sean is going to apply for a grant, in hopes that he can freely help groups like mine. Kind of like a product manager. He's pitching his idea at a Rare Disease workshop this week in Toronto. Sean passed his slides along to me. In the opening of his presentation he introduces our company, Jonah's Just Begun. At the end he closes with and I quote: "If Jill Wood can become a virtual pharma, Pfizer and other pharmas can be more like Jill and the other parent entrepreneurs, smaller, leaner, working on many more diseases as collaborators."

I keep referencing the term Tiger Mom it got stuck in my head after watching Lorenzo's Oil last week. I associated/mistook the term to be the same term of a recent article in the NY times " Dragon Mom." Now that I actually took the time to research the definition and difference between Tiger Mom and Dragon Mom, both terms suck. I'm neither of them. I take back calling myself and friends a Tiger Mom.

Tiger Mom's are described as parents who hover and obsess over grades and the like. For those that know me, would know that I hold life experiences much more important then a grade on a paper. Dragon Mom's are parents that have had to accept the impending death of their child. I couldn't even get past the second paragraph of the recent article. I finally just skimmed through the rest of the article. As you all know I have not accepted the fact that Sanfilippo is a terminal disease, I know that it is- no child has ever survived it. But Jonah isn't sick, he's thriving and now we have viable research happening. There is hope!

Back to Tiger Mom vs Dragon Mom. I want to come up with a different term for Mom's and Dad's fighting back. This is our chance to save our kids and coin a new term (we need a literature major.) Turtle Mom.. was the first thing that came to my mind, but slow is not an option. Gladiator Mom... kick ass and angry as hell. We're not all that angry, I'm more sad. Something wilful, tenacious, raw and sensitive. Mountain Mama... grass roots, moving mountains, doesn't really work.... Think about it, get back to me. This could be the name of our movie, so really think about it.