2017 John Tanner Pumpkin Shuffle

$15,000 Raised for Batten Disease

 

The Our Promise to Nicholas Foundation John Tanner Pumpkin Shuffle 5 K Run/Walk was on Saturday October 14 at Russell’s Garden Center in Wayland, Massachusetts. We proudly raised $15,000 and had over 160 participants. The day was a little overcast weather and rain sprinkled at times but the event was a great success. We were lucky to be joined and emcee by WCVB channel 5 Boston reporter Erika Tarantal. All winners received a medal and pumpkin! Thank you to our sponsors. Especially Superior Plumbing, Russell’s Garden Center, Congress Asset Management, Berg, LLC, Starz Salon of Sudbury MA, Middlesex Saving Bank of Wayland.


9th Annual Easter Egg Hunt 2017

$25,000 Raised for Batten Disease.

 

Easter was in full swing as the Our Promise to Nicholas Foundation’s (OPTN) 9th Annual Easter Egg Hunt drew in more than 1,100 guests who enjoyed the fun festivities at the NH Sportsplex in Bedford.  The dome was alive with smiling faces, with colorful eggs blanketing the fields and kids scurrying about for those coveted treats.

Save the date: Saturday March 31, 2018

10th Annual Easter Egg Hunt Festival , NH Sportsplex ,68 Technology Drive, Bedford, NH

More information coming soon.

Questions please contact Heather Dainiak


FDA approves first treatment for a form of Batten disease

The U.S. Food and Drug Administration today approved Brineura (cerliponase alfa) as a treatment for a specific form of Batten disease. Brineura is the first FDA-approved treatment to slow loss of walking ability (ambulation) in symptomatic pediatric patients 3 years of age and older with late infantile neuronal ceroid lipofuscinosis type 2 (CLN2), also known as tripeptidyl peptidase-1 (TPP1) deficiency.

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Matty O’Leary

Our primary mission is to raise funds and create partnerships in order to promote awareness, provide education and develop translational research regarding Batten Disease.

Apply for research grants at our sister site:

BattenLogo_FinalThe mission of the Batten Research Alliance (BRA) is to solicit, accept, and provide an unbiased peer review of research proposals for the purposes of funding worthy medical enterprises to work towards curing Batten Disease. In the future it will provide needed medical information and resources to physicians, nurses and other medical personnel. By bringing other nonprofits, individuals, organizations, and the Batten medical world together, we can share ideas and be a stronger voice in the world. To become a member of the BRA, to submit research proposals, or for more information please visit BattenResearch.org.

Thank you to our scientist

Here are a few photo’s I wanted to highlight and let you know I had the opportunity to talk with a few of my Batten Disease scientists celebrities!  Here in blue is  Dr. Jonathan Mink and his crew from the University of Rochester, NY. They met with many families at the 2017 BDSRA Family support conference (July 6-9 in Pittsburg). Some of the information they obtained was added to the natural history biorepositry database.  Dr. Mink took the time to talk with me about the types of data they are gathering in NY. The third photo is Dr. Susan Cotman at the BDSRA conference with her crew from Massachusetts General Hospital.  She also took the time to talk with me about her lab in Boston. She was collecting data but her data is in the form of blood samples from children with Batten Disease and also the parents.  It is so important to obtain these blood samples to help further research for …

This video is for the families that are going through their own trials. All the trials are similar to the one we went through with Nicholas.