• Get Involved
    • Make a Donation
    • Our Sponsors
    • Batten Disease Support
  • Egg Hunt Festival 2023
  • About
    • Batten Disease
    • Nicholas
    • OPTN
    • Board of Directors
    • Contact
    • OUR BLOG
  • 2022 Newsletter
  • Donate Via Qgiv

March 2016 Easter Egg Hunt and Scientific Workshop

May 13, 2016 by heather in Fundraisers
March 2016 Easter Egg Hunt and Scientific Workshop

Thank you to our sponsors, donors and volunteers. You make this happen for Our Promise to Nicholas!

$41,000 Raised for Batten Disease, Researchers Gather in Bethesda Maryland.

 

Easter was in full swing as the Our Promise to Nicholas Foundation’s (OPTN) 8th Annual Easter Egg Hunt drew in more than 1,500 guests who enjoyed the fun festivities at the NH Sportsplex in Bedford. The dome was alive with smiling faces, eggs blanketing the fields and kids scurrying about for those coveted treats. The authentic compassion, dedicated volunteers and the deep commitment demonstrated by the OPTN Board Members combined for another exciting year.

 

The OPTN Foundation is proud to have the dedication of the community

in support of finding a cure for Batten Disease. A rare and currently fatal neurodegenerative disease, Batten afflicts hundreds of children in the United States.   Seven years ago, the Egg Hunt was developed to create joy and celebrate Nicholas Dainiak’s life providing hope to those that loved him. It has been close to two years since Nicholas passed away, but his spirit filled every corner of the room. It was with this love that OPTN raised $41,000; the most extravagant OPTN event to date!

The money that was raised was immediately put to good use.

OPTN hosted its 3rd bi-annual scientific conference on March 29th, in Bethesda Maryland. Over 30 doctors, researchers and scientists came from all over the world to share and collaborate on their latest work in the fight to cure Batten Disease.  Small diseases, like Batten do not have the backing from larger organizations to fund research, let alone support a face to face collaborative session. OPTN is proud to champion such efforts.  New proposals for research will be submitted to the Batten Research Alliance (OPTN’s sister organization) through the fall of 2016. This year, OPTN continues to support the research selected from 2014, including a biorepository and natural history database through the University of Rochester and Harvard University, advancing the heath community in finding a cure for this awful disease.

 

Stuffing 10,000 eggs brings people together in the most positive state of mind.

 

The gift of this event was about showing our children and others how a lighthearted event can make a meaningful difference. Knowing that Nicholas, in his own way, brought so many families, volunteers and community members together embodies the spirit of Easter, and the love of a family working tirelessly for the hope of one day finding a cure for such a debilitating disease.

 

Batten Disease Scientific Workshop, Bethesda Maryland March 29-31, 2016.

Thank you to our OPTN donors and Batten family foundations:  Blake’s Purpose Foundation, Mary Payton Miracle Foundation, Drew’s Hope, Garrett the Grand  Foundation, Noah’s Hope, Hope for Bridget, Fight for Nicolas, Taylor’s Tale, Charlotte and Gwenyth Gray Foundation, Ethan’s Reason, BDSRA  and Dr. David Pearce- Stanford Lab.  Together we are strong and you made this workshop happen.

FullSizeRender (4)

 

 

** All photos  from Easter Egg Hunt below are by Joanne Smith, Headshots Photography  Saturday March 26, 2016

_HSP1307p_HSP1316p_HSP1320p_HSP1325p_HSP1342p_HSP1345p_HSP1346p_HSP1356p_HSP1371p _HSP1421P_HSP1393p_HSP1390p_HSP1387p_HSP1384p_HSP1376p _HSP1266p_HSP1273p_HSP1274p_HSP1277p_HSP1279p_HSP1285p_HSP1292p_HSP1295p_HSP1300p _HSP1226p_HSP1237p_HSP1241p_HSP1245p_HSP1250p_HSP1255p_HSP1259P_HSP1262p _HSP1185p_HSP1193p_HSP1196p_HSP1199p_HSP1201p_HSP1206p_HSP1208p_HSP1217p_HSP1222p _HSP1099p_HSP1104p_HSP1109p_HSP1117p_HSP1123p_HSP1131p_HSP1134p_HSP1140p _HSP1147p_HSP1152p_HSP1154p_HSP1157p_HSP1160p_HSP1166p_HSP1169p_HSP1176p_HSP1183p _HSP1043p_HSP1048p_HSP1052p_HSP1073p_HSP1082p_HSP1089p_HSP1095p
_HSP1098p _DSC0427P_HSP1021P
_HSP1096p_HSP0928P_HSP0943P_HSP0987P_HSP0971P

_HSP1098p

Tweet
Share
Pin it
Previous StoryJanuary 2016 Next StoryHappy Holidays 2016
  • Popular
  • Latest
  • Comments
  • Southwest incident 24th December 2011

     Southwest incident

  • March/April 2011 17th April 2011

     March/April 2011

  • 2018 John Tanner Pumpkin Shuffle 5 K 23rd October 2018

     2018 John Tanner Pumpkin Shuffle 5 K

  • June/ July 2011 2nd August 2011

     June/ July 2011

  • 2018 EGG HUNT FESTIVAL 14th May 2018

     2018 EGG HUNT FESTIVAL

  • 11th January 2023

     2021 Newsletter

  • 9th annual Nicholas Giving Tree Project 2022- Holiday Care Packages for Children with Batten Disease 11th January 2023

     9th annual Nicholas Giving Tree Project 2022- Holiday Care Packages for Children with Batten Disease

  • 2018 John Tanner Pumpkin Shuffle 5 K 23rd October 2018

     2018 John Tanner Pumpkin Shuffle 5 K

  • BDSRA Batten Disease Family Support Conference 2018 in Nashville, Tennessee 15th July 2018

     BDSRA Batten Disease Family Support Conference 2018 in Nashville, Tennessee

  • 2018 EGG HUNT FESTIVAL 14th May 2018

     2018 EGG HUNT FESTIVAL

  • Southwest incident 243107 Fri+00:002016-05-13T19:17:38+00:00+00:0005b+00:00Fri, 13 May 2016 19:17:38 +0000 2011

     Southwest incident

  • June/ July 2011 2513 PM00000070000003831 2011

     June/ July 2011

  • June 29, 2010 293107 J0000005+00:00 2010

     June 29, 2010

  • 313831 Maypm16 2011

     May 2011

  • March/April 2011 173107 PMpFri, 13 May 2016 19:17:38 +000017Friday 2011

     March/April 2011

CATEGORIES

  • Fundraisers
  • Nicholas Update
  • Uncategorized

ARCHIVES

  • January 2023
  • October 2018
  • July 2018
  • May 2018
  • January 2018
  • December 2017
  • August 2017
  • July 2017
  • January 2017
  • November 2016
  • May 2016
  • January 2016
  • December 2015
  • November 2015
  • September 2015
  • June 2015
  • May 2015
  • April 2015
  • January 2015
  • December 2014
  • October 2014
  • July 2014
  • May 2014
  • February 2014
  • December 2013
  • November 2013
  • October 2013
  • July 2013
  • June 2013
  • May 2013
  • April 2013
  • March 2013
  • December 2012
  • November 2012
  • October 2012
  • August 2012
  • July 2012
  • March 2012
  • February 2012
  • January 2012
  • December 2011
  • October 2011
  • August 2011
  • May 2011
  • April 2011
  • February 2011
  • December 2010
  • October 2010
  • September 2010
  • August 2010
  • July 2010
  • June 2010
  • May 2010
  • March 2010
  • January 2010
  • December 2009
  • November 2009
  • October 2009
  • September 2009
  • August 2009
  • July 2009
  • June 2009
  • May 2009
  • April 2009
  • March 2009
  • February 2009
  • January 2009
  • December 2008

NEWSLETTER SIGN-UP

Thank you for your subscription.
Your email format is wrong!
Sad, but we couldn't add you to our mailing list ATM.
Loading...
Donate Via Qgiv
Copyright Our Promise to Nicholas PO Box 10106 Bedford, NH 03110 | Website by Squawkdog
  • Get Involved
    ▲
    • Make a Donation
    • Our Sponsors
    • Batten Disease Support
  • Egg Hunt Festival 2023
  • About
    ▲
    • Batten Disease
    • Nicholas
    • OPTN
    • Board of Directors
    • Contact
    • OUR BLOG
  • 2022 Newsletter
  • Donate Via Qgiv