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Insight Into Sanfilippo Provided by ConnectMPS Global Registry

We spent a few days in San Diego at the International MPS Conference hosted by the MPS Society.  Alongside our ConnectMPS and Mission: Hide and Help posters was a poster published by BioMarin.

This is a perfect example of how sharing patient-reported data can speed up the drug development process when shared freely.

Click on image to […]

By | August 30th, 2018|Uncategorized|Comments Off on Insight Into Sanfilippo Provided by ConnectMPS Global Registry

“Compared to what Sanfilippo Children and their Families have to go through, a Tough Mudder seems like Nothing” -Mari-Elaina Garcia (JJB’s Director of Operations)

 

Mari has lost her mind and decided to participate in the Tough Mudder Half on July 22nd, just days before her 39th Birthday.  In […]

By | June 13th, 2018|Uncategorized|Comments Off on

Two Birthdays, Two ways to Help.

Jill’s Birthday Wish
(co-founder of JJB)
The weather has been so crazy we didn’t even realize it was Spring. More importantly, we didn’t realize that Jill’s Birthday was right around the corner!!
Just like last year, Jill’s birthday wish is to have a kick-butt Halloween fundraising event. Click on […]

By | May 23rd, 2018|Uncategorized|Comments Off on Two Birthdays, Two ways to Help.

JJJB Holiday Remit Drive and 7th Annual Newsletter

Click Image to read full Newsletter…

By | November 20th, 2017|Uncategorized|Comments Off on JJJB Holiday Remit Drive and 7th Annual Newsletter

The Launch of MISSION: HIDE AND HELP

We are more than excited to launch our new campaign Mission: Hide and Help

This is a grassroots social experiment meant to help diagnose Sanfilippo Syndrome.  Aimed at doctors and executed by kids, we are mixing our love of Pokemon with the urgency to find more patients.  “Nobody can find rare like you can”.

Read full press release […]

By | September 19th, 2017|Uncategorized|Comments Off on The Launch of MISSION: HIDE AND HELP

MPS awareness day is coming, here is an update to cheer us all up.

Biomarin is full speed ahead with their clinical trial. If you haven’t updated your surveys on our patient registries, now is a good time to do so. Help BioMarin help us. https://connect.patientcrossroads.org/?org=ConnectMPS If you haven’t registered your MPS, ML or Glycoprotein family members, this would be a great way to celebrate MPS […]

By | April 11th, 2017|Uncategorized|Comments Off on MPS awareness day is coming, here is an update to cheer us all up.

Jill Wood, Rare Disease Congressional Caucus Briefing

 

Jill was asked to speak at the Rare Disease Congressional Caucus briefing this past week when we were in Washington, D.C. for Rare Disease Week. Although Jill addressed the caucus 2 years ago, she was still a bit hesitant to accept.  When she found out she was […]

By | March 8th, 2017|Uncategorized|Comments Off on Jill Wood, Rare Disease Congressional Caucus Briefing

Anonymous Donor to Make a $20,000 Donation!

Tomorrow is Our Chance

images-1I KNOW! We are excited too.  If we can raise $10,000 tomorrow, #GivingTuesday, we will get a DOUBLE MATCHING donation of $20,000.  On top of that, the charity that raises the most will get a $25,000 donation from Crowdrise.

 

Please give what you can tomorrow, and urge […]

By | November 28th, 2016|Uncategorized|Comments Off on Anonymous Donor to Make a $20,000 Donation!

The National MPS Society, Patient Crossroads,  & Jonah’s Just Begun Presents: The ConnectMPS Registry

 

Join our webinar for ALL STAKEHOLDERS!

August 16, 2016 at 12pm EDT

The online meeting will take place via webinar.  To join please visit: http://join.me/386-537-239

TOGETHER WE CAN BRIDGE THE GAP

ConnectMPS is a patient registry, MPS and ML organizations are working together from […]

By | August 10th, 2016|Uncategorized|Comments Off on The National MPS Society, Patient Crossroads,  & Jonah’s Just Begun Presents: The ConnectMPS Registry

Heroes Among Us-Official Movie Trailer

Screen Shot 2016-07-07 at 4.02.29 PM Click the video to play trailer.

 

Don’t miss this summers greatest event, ‘Heroes Among Us’. Coming July 23rd, 2016. Tickets on sale now: http://bit.ly/JJBHeroes

By | July 7th, 2016|Uncategorized|Comments Off on Heroes Among Us-Official Movie Trailer