Jonah’s Just Begun (JJB) and Cure Sanfilippo Foundation are pleased to announce that they will be joining forces as they move forward with the common goal of finding a cure or treatment for Sanfilippo Syndrome.
2018-11-26T09:42:46-04:00 November 26th, 2018|Uncategorized|Comments Off on JJB Joining forces with Cure Sanfilippo Foundation
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 […]
2017-09-22T22:19:16-04:00 September 19th, 2017|Uncategorized|Comments Off on The Launch of MISSION: HIDE AND HELP
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 […]
2017-04-11T14:07:43-04:00 April 11th, 2017|Uncategorized|Comments Off on MPS awareness day is coming, here is an update to cheer us all up.
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 […]
2017-03-08T13:03:51-04:00 March 8th, 2017|Uncategorized|Comments Off on Jill Wood, Rare Disease Congressional Caucus Briefing
I 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 […]
2016-11-28T10:27:26-04:00 November 28th, 2016|Uncategorized|Comments Off on Anonymous Donor to Make a $20,000 Donation!