Pumpkin Shuffle

SATURDAY, Oct. 14th,2017 10AM

 

To Benefit Children with Batten Disease. Race starts and finishes behind Russell’s Garden Center:
397 Boston Post Road, Wayland, MA
Every participant receives a free mini pumpkin. Special Guest: Erika Tarantal – Anchor/Reporter for WCVB in Boston. She reports for the New Center 5 Eye Opener and contributes to the stations new magazine program Chronicle.


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.


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.

Read More…

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.

 
Today this photo came up on my FB page to post. I have a love + hate for this photo. When I remember  the time it was taken. There was the sting of Nicholas’ rapid decline in his health. Today there is not a day that goes by that I would love to wrap my arms around my boy and keep him with me forever.  That would be selfish of me to keep him hear on earth and struggle being so ill.  I had to let him go free in peace and I never have any regret the time we had with him.   I think about what our family and friends went through with us over that 6 year time. Providing more love and support than I have ever felt in my life. This gift I will forever be thankful  in our darkest …

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.