Black Friday deals vs Giving Tuesday or a little bit of
both… This morning I received a Google Calendar alert letting me know it was
Black Friday as if it’s a National Holiday. Jeremy, Jonah and I have a family Black
Friday tradition; tickets to the Big Apple Circus. We love it. Jonah LAUGHED so
hard this year I wish I had a video of him just laughing and cheering for more.
He loves the slapstick clown routines. I love that he loves it.
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| Big Apple Circus, 2018 |
I can’t fathom going into a mall to shop for Christmas
presents, but then again I used to work in a department store on Black Friday. Working
retail, ruined the holidays for me. I’m sorry I don’t like being forced to buy
people stuff. It takes all the fun out of it. Jonah’s diagnosis also sucked the
life out of the Holidays for me, I go through the motions for Jonah. The tree
of course, Elf on the Shelf… Yikes! I have not pulled out Michele and Michelle from hiding. I want Jonah to
have everything that many American children would have at Christmas. I’m not a
zombie, but I live life through Jonah.
It’s implausible for Jeremy and I not to think that
we won’t have holiday family-time memories into Jonah's adulthood. Jeremy and I as
grandparents watching our grandchildren tear open presents.
Jonah’s second Christmas was the best. We spent it at Grandmas house in Oregon. Jonah still on NY time got up at 5:00am just like I used to do as a child. He scooted down the stairs, I bounded down ahead of him to watch his expression as he looked at the tree and mountain of presents. The wonder and amazement as he thought is this all for me? Jeremy and Grandma kicked their own bodies out of bed to catch the moment. Priceless. Fortunately for Jonah, Grandma likes to shop.
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| Jonah helps Dad make an apple pie. |
Jonah’s second Christmas was the best. We spent it at Grandmas house in Oregon. Jonah still on NY time got up at 5:00am just like I used to do as a child. He scooted down the stairs, I bounded down ahead of him to watch his expression as he looked at the tree and mountain of presents. The wonder and amazement as he thought is this all for me? Jeremy and Grandma kicked their own bodies out of bed to catch the moment. Priceless. Fortunately for Jonah, Grandma likes to shop.
I went to Seoul a few weeks ago. I was asked along with a
few of the scientists that I work with to come out and present to an auditorium
of scientists. I couldn’t say no, they offered me business class, I have never
flown business class before. My scientists presented their MPS research and I
told my story. My talk opened with Christmas 2010. Jonah
should have had his diagnosis before the Holidays, but we lucked out. We had
three cancellations for the MRI between August and January. For the first
appointment Jonah was sick. The second
time they over scheduled Jonah and I left because Jonah was starving and we
couldn’t wait anymore. The last time there was a snowstorm and they called and
tried to push Jonah’s appointment back. Babies can’t wait until noon to eat. We
made it through the Holidays, ignorance is bliss.
Seoul was pretty amazing. I have to admit, when it came time
to go to Seoul I didn’t feel like going. Phoenix Nest just moved into our new office, we
had a mountain of work to do. I haven’t mentioned that in September Phoenix Nest won a
5 million dollar NIH grant. Hence finally getting an office. Funny thing not to
mention. I know. It’s a HUGE deal and with it comes with a lot more work. I haven’t
been able to catch my breath. Then Jonah got hurt at school and we had to
negotiate the wheelchair thing and doctors appointments. Something had to give
so I cancelled our Halloween fundraiser. That hurt, I spent a good portion of
the summer designing the set. I plan on re-booking for next Fall. Jeremy has
taken on the responsibility of researching middle school for Jonah.I think we might have found it. But it's a lottery system, so fingers crossed.
 | ||||
| Dr. Brian Bigger, Dr. Patricia Dickson, Dr. Tsui-Fen Chou and Jill Wood |
Once in Seoul, sitting in the front row of the auditorium, shoulder to
shoulder with the scientists that I have been working with for the past 4-8 years.
I felt good. One by one we gave our talks. Brian actually complemented me, was
that a tear in his eye? I think he may
have been moved.... My scientists don’t attend the gigs that I speak at. I have
listened to them lecture a dozen times in a dozen different countries. This
time I got to speak right along with them. I had a moment.
I stayed an extra day so that I could take a peek at the city, I never believed that I’d actually get to travel to Asia. I did one of those hop-on and off bus tours. It was really good. I could have spent a week, going through all of the routes. Way better than NY tour buses. I did do a little shopping, but I picked out what I wanted to buy for people. Our HR and billing department director wanted to send me with a shopping list of items to buy in Seoul. I chagrined i.e that ain’t gonna happen.
I stayed an extra day so that I could take a peek at the city, I never believed that I’d actually get to travel to Asia. I did one of those hop-on and off bus tours. It was really good. I could have spent a week, going through all of the routes. Way better than NY tour buses. I did do a little shopping, but I picked out what I wanted to buy for people. Our HR and billing department director wanted to send me with a shopping list of items to buy in Seoul. I chagrined i.e that ain’t gonna happen.
By the way that 5 million dollar grant is for the MPS IIID
ERT program that is happening at LaBiomed. Jonah has type C NOT D. Hence the
funding isn’t going to a treatment that will help Jonah. Type C will get there. Brian and I have been getting quotes for
vector production for our gene therapy program, this will help our IIIC
children. Vector production is basically the one major science thing left to
do before trial. Roughly 3.5 million stands between Jonah and a treatment. The rest of the work is trial design, applications, FDA
meetings etc. This brings me to our big news.
JJB is merging with The Cure Sanfilippo Foundation, CSFF. There is a legal definition for this merger, in layman’s terms I’m legally
shutting down JJB’s 501(c)3 status i.e. not-for-profit status. JJB will be
joining forces under CSFF’s not-for-profit.
Since conception, CSFF has always been partners with JJB. They have been there for JJB in our time of need; coming to the rescue when JJB fell short on a gene therapy payment and funding another type C program that JJB couldn’t afford to take on. Co-Founders Glenn and Cara i.e. Eliza’s parents are allies and friends. I am emphatically relieved that we have a partner that has the: passion, drive and infrastructure to take on JJB’s commitments and mission. I have no doubt that CSFF will uphold JJB’s name and more importantly help take what H.A.N.D.S. has built for MPS IIIC and D to the next level. Official Press Release
Since conception, CSFF has always been partners with JJB. They have been there for JJB in our time of need; coming to the rescue when JJB fell short on a gene therapy payment and funding another type C program that JJB couldn’t afford to take on. Co-Founders Glenn and Cara i.e. Eliza’s parents are allies and friends. I am emphatically relieved that we have a partner that has the: passion, drive and infrastructure to take on JJB’s commitments and mission. I have no doubt that CSFF will uphold JJB’s name and more importantly help take what H.A.N.D.S. has built for MPS IIIC and D to the next level. Official Press Release
JJB has come to a
fork in the road in the race of life. To the left we have Phoenix Nest Inc. inching
its way to the starting line, revving and rearing to go. To the right we have
JJB exhausted and in the need of a gas. This
analogy is a metaphor of me. Phoenix
Nest is ready to take off but we can’t go until we find a loving family to adopt JJB. Tag
you're it CSFF. We will see you and embrace you at the finish line. Long live our
children.
JJB supporters. I’m not going to thank you for all of your
support because this is NOT a GOODBYE, it is a HELLO. I know that many of you
are already acquainted with our friend Eliza and the foundation that she
inspired, CSFF. All the Sanfilippo foundations
inspired by children affected with Sanfilippo Synrome have the same mission in
life. Save our kids. No parent should ever have to hear: “ I’m sorry your child
has a terminal illness and there is no cure.”
.Donate to Cure Sanfilippo Foundation
.Donate to Cure Sanfilippo Foundation
JJB’s Holiday Remit letter will be coming your way via snail mail and email.
Two ways to participate online:
#1 CROWDRISE
For those of you who like to do the social media contests, please consider becoming a team member on Cure Sanfilippo Foundation's Holiday Giving Campaign. Save lives-Join the TEAM
-Note this contest last through December and goes live Tomorrow as well.
#2 FACEBOOK
https://fb.com/fund/
-Note this contest lasts for one day. Tomorrow Giving Tuesday.
You can prepare now by following the link. The post like crazy first thing in the morning. Last year the 7 million in FB cash prizes ran out in 20 min. So get your trigger finger out.
A special shout out to the JLM fans that have supported JJB
and Jonah. Jonah has received your gifts and well wishes. Please know that Jonah has loved every one of
them and I personally commend you for shopping. You’re a better person then I. Jeremy and
I read with Jonah every day, it keeps Jonah engaged in reading, retelling the story and writing. We love Avengers and Marvel, all your books made his day. His leg has healed and he’s
back to his rambunctious self. Writing thank you notes is one of our activities
to keep him writing. But if you don’t get one, don’t hold it against us. Please know that we appreciate your gifts of well-being.
Please continue to follow JJB and make your donations to Cure Sanfilippo Foundation.
Disclaimer:
-JJB's not-for-profit status will continue through February. If you make a mistake and send to JJB we will still receive the donations and will transfer to Cure Sanfilippo Foundation.
-By February all JJB social media sites will change to community pages and donation options will be reverted to Cure Sanfilippo Inc.
-JJB's branding will remain relevant, but in my own voice. Everything I say in my own voice are my thoughts and must be taken with a grain of salt. Families of Sanfilippo children should always due their own research and talk to their doctors. I am NOT a doctor and I do not give medical advice. If I accidently do, ignore it. I take no responsibility for my own words.
-Remember as the director of a biotech company, Phoenix Nest, I have a conflict of interest.
Follow Cure Sanfilippo Foundation too. :)
While you are online please like and follow Cure Sanfilippo Foundation on:
-FB: https://www.facebook.com/CureSanfilippoFoundation/
-Twitter: https://twitter.com/CureSanfilippoF
-Instagram: You can find that link on your own. Instagram is too hard for me.
-Website: https://curesff.org/
CSFF address:
curesff@gmail.com
P.O. Box 6901Columbia, SC 29260 -Lastly you can change your Amazon Smile to Cure Sanfilippo Foundation.
BTW... If you want to read more about Phoenix Nest and what that company is doing go here for our recent press releases. http://www.phoenixnestbiotech.com/news/
FYI... This is weird for Jeremy, Mari and I too. We don't take it lightly, I have been thinking about how we would handle this transition for months now. JJB will always be here, I have a tattoo of the logo and so does Uncle Josh! I have confidence that CSFF will uphold everything that HANDS built.
Happy Holidays, I hope your Thanksgiving was delicious! The apple pie that Jonah and Jeremy made was amazing! Jonah is a surprisingly good baker, he knows his way around the kitchen.
Lots of Love,
Jill, Jeremy, Jonah and Mari
FYI... This is weird for Jeremy, Mari and I too. We don't take it lightly, I have been thinking about how we would handle this transition for months now. JJB will always be here, I have a tattoo of the logo and so does Uncle Josh! I have confidence that CSFF will uphold everything that HANDS built.
Happy Holidays, I hope your Thanksgiving was delicious! The apple pie that Jonah and Jeremy made was amazing! Jonah is a surprisingly good baker, he knows his way around the kitchen.
Lots of Love,
Jill, Jeremy, Jonah and Mari
