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Wednesday, August 31, 2011


I can see clearly now the rain has gone
I can see all obstacles in my way
Gone are the dark clouds that had me blind
It's going to be a bright, bright sunshiny day

I think I can make it now the pain has gone
And all of the bad feelings have disappeared
Here is the rainbow I've been praying for
It's gonna be a bright, bright sunshiny day

Look all around there's nothing but blue skies
Look straight ahead nothing but blue skies

I think I can make it now the pain has gone
And all of the bad feelings have disappeared
I can see clearly now the rain has gone
It's gonna be a bright, bright
Sunshiny day
-Johnny Nash

 

My all time favorite song. I’ve never been able to memorize lyrics. (Poor Jonah, the only song I sing to him is the ABC’s.) Growing up in Oregon, this was my theme song, whenever it stopped raining I’d sing the same first two lines over and over again. I never really paid attention to the gloomy lines. I realize now how appropriate of a theme song this is for us.

It has been a really long hard month. Mercury Retrograde.... Earthquakes...Hurricane....3rd notice for Jury Duty....Potty Training. You get the picture. It’s really annoying when life gets in the way of work.

There have been some great bright spots in the month. Our benefit at Stoller was wonderful. No hurricane there, just blue skies. It was gorgeous. My friends and family helped us raise close to $16,000 for medical research! There were a few less people this year, but those that came took advantage of the great cause. I can’t thank the organizers enough, it was a flawless event. You’d think that Mom, Melissa, Jessica, Judy and Carol had been doing this for years! I wrote everyone involved nice Thank You cards and dropped in the mail. I put them in one of the blue boxes on the morning of a huge rain storm, smooth move. I realized after getting all the cards back that it was Mercury Retrograde. The cards looked as if they went through the dishwater. I can’t believe they were able to return them to me, all but the return address sticker was visible. I mention this, because I haven’t had time to rewrite the cards. Don’t want anyone to think I forgot to thank them.

We raised $1,500.00 selling passes for Macy’s Shop for a Cause. Aunt Kelly and our friend Justine booked a table at their local Macy’s to represent Jonah’s Just Begun! Very cool! Thank You ladies! I made Aunt Kelly a story board for her table, I was so proud of it. Searched all over for a box to send it in. Paid $60.00 bucks for it to get there in time. Yup, it’s missing. Mass transit was shut down in NYC, due to hurricane Irene. I didn’t get to go to our Macy’s Shop for a Cause event, next year.

What a crazy month. I should have known that it was Mercury Retrograde, it started the day I flew to Oregon. Our flight was delayed, when we did board we sat on the runway for two hours before we took off. Jonah was bonkers. You all know what happened on our flight home. Sorry I had to share that story with you, Mercury made me tell you. I get rather surly during Mercury Retrograde and say shocking things. Since Jonah was dx’d I stopped studying astrology. When I went to check on Mercury, I couldn’t help but notice another aspect in my chart. The overwhelming theme for the next few month’s is help from friends. So true.. If it wasn’t for the support of my friends and family, this month would have just been one Natural Disaster after the next. BTW, my ceiling in the bathroom has to be replaced, due to the rain storm.

Another bright spot- Christi, mom to Levi found a guardian angel. This amazing philanthropist wrote JJB a check for $15,000 dollars! Despite my inability to send anything out in the mail, our supporters flooded our PO BOX and PayPal with checks this month! Gene therapy here we come.

Since we landed back In NY, I have been busy corresponding with our scientist, lawyer and families. JJB’s lawyer was ready to go with a draft for our scientists our scientist had already been interviewing for a new post doc. They are eager to get our gene therapy going. JJB will be writing a check to Alexey in Canada for $30,000 by the end of the week. Our sister foundation JLK is ready to go with $20,000. That 50K will put our gene therapy in motion. We will then need to be able to come up with 65K every 6 months for the next 30 months. It’s a lot of pressure, but we have no other choice. We have to raise this money for our kids. I’m comforted by the fact that in a years time, JJB has now contributed over $80,000 dollars to science. We continue to grow. More and more people are taking notice and starting to help.

Of course gene therapy is just one of our projects. We can never have too much science on the table. Alexey has agreed to collaborate with another scientist, that would like the use of our mouse “Juniper.” I had been watching the work of Dr. B. for some time now, in hopes that he would turn his attention to us. The group of Sanfilippo parents that joined us in the UK, got the chance to speak with Dr. B.’s post doc. That set the collaboration in motion. Last week Dr. B. cc’d me on an email to Alexey personally asking him to collaborate together on our behalf. Pretty cool, by next year there will be baby Junipers running around mazes in two more labs.

I got a call from another type C family this month too. The young man is 25 years old and doing well. No major health complications. His Aunt said that he was always very bright up until his primary school years. His speech and memory were really good. The family met one of our doctors at an MPS family function, it was the first time they had ever attended one of the MPS meetings. They approached Dr. Shapiro at the meeting and wanted to know if there was any science happening for type C. Shapiro gave them our contact information. It’s all about networking, keeping in close contact with the scientists and clinicians that come in contact with other families is huge. So now we’re up to 18 type C cases in the US. Where are the other 90?

Jonah has had a very happy and healthy summer. He has really enjoyed the play dates his sitter takes him on, his sitter will be leaving us soon. After labor day she is taking a full-time job. For the month of September Jonah and I will be on our own, then he will start school in October. I’m frantically trying to get all the work done that I can now, September is going to be a forced vacation. Jonah will be up soon, my favorite part of the day. Jonah slowly opens the bedroom door and groggily stumbles towards me, climbing in my lap. He stops whatever work I’m doing to look at our photo gallery. He tells me: “my turn.” I love the smell and feel of him in the morning.

Coming up.....
Next week Jonah and I speak to an auditorium of medical students at Columbia-Presbyterian.
Levi’s family is also having a golfing fundraiser in WI on the 21st.
Jeremy got a new job! He's working on a "A Gifted Man" the show premiers the 23rd.
The Burkes have their annual “bowling” fundraiser in Mass on the 25th.
If you have any friends or relatives in the area, please forward them the flyers. They can be found on our website under the “fundraising & event” tab.
My friend Mari, has been helping JJB, we’re working out some fundraisers for NY. We will be sending out email blasts, keeping our supporters posted on upcoming events. Watch out for the emails and join our mailing list, forward the invites to your friends and family. It’s important to continue to spread our campaign as far and wide as we can. Networking and raising awareness continues to pay off, you never know what will happen next.