M@ri

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So far M@ri has created 22 blog entries.
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The Final Countdown

Gene Therapy have you ever heard of it? 

Sanfilippo Syndrome have you ever heard of it?  

If No, than consider yourselves fortunate.

The children and families suffering from rare genetic diseases are not so fortunate.  Parents of terminally ill children love their children everyday as if each day could be […]

By | May 6th, 2019|Uncategorized|Comments Off on The Final Countdown
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JJB Joining forces with Cure Sanfilippo Foundation

Release Date: 11/26/2018

Jonah’s Just Begun to join forces with Cure Sanfilippo Foundation

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.

Formed […]

By | November 26th, 2018|Uncategorized|Comments Off on JJB Joining forces with Cure Sanfilippo Foundation
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Canceled- Gingerbread House of Horrors

In light of everything that has gone down the past few weeks, we are calling off our Halloween fundraiser Gingerbread House of Horror. We hope to postpone to next year. Mari is working on […]

By | October 10th, 2018|Uncategorized|Comments Off on Canceled- Gingerbread House of Horrors
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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
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“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
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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.
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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
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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
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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.
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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
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