Jenna & Patrick’s Foundation of Hope

In March 2006, at 21 months old, Jenna and Patrick Partington were diagnosed with Cystinosis. Their doctors had initially never heard of Cystinosis and believed that it was only a text book disease. Jenna and Patrick’s parents spent countless hours researching Cystinosis to try and understand what their children were suffering from and were concerned at the lack of research that is being done to improve medication (and ultimately provide a cure), describing Cystinosis as an ‘orphan’ disease – that is to say one that has not been adopted by the pharmaceutical companies due to its rarity and hence the unprofitability of such research for them.

It was this lack of research that prompted the formation of a foundation called "Jenna & Patrick’s Foundation of Hope, Inc." and during their first fundraising event, called Chip In Fore Charity, they raised an incredible $185,000 during June 2006!

It is inspiring to hear of their great work and their success in being able to raise vast sums to provide grants for doctors and researchers and we, here in the UK, wish them well in their future work. The foundation has a growing list of supporters (see their website) and in October 2006 they are also undertaking a further event "Walk of Hope".

To read more about their story, please visit www.jennaandpatrick.org/.

Comments are closed.

CFUK and Cystinosis Ireland Jointly Funding Two New Research Projects We are extremely pleased to announce that, for the first time, we have collaborated with [...] Read more...
Latest News and Updates Webinar – 27th November 2021 Please join us on Saturday, 27th November at 2pm for our ‘Latest News and Updates’ [...] Read more...
Cystinosis Comic Book Series by Artist Kevin McCalla The Cystinosis Research Network in the US has teamed up with Kevin McCalla, a young artist who [...] Read more...
Please Subscribe to Our New Mailing List We are very excited to launch our new mailing list! By signing up for free at the link below [...] Read more...
All website content copyright Cystinosis Foundation UK (Charity No.1074885) 1997-2013, except where explicitly stated.
Data Protection Act Registration Number: Z9880997. Please refer to our terms and conditions and our privacy policy.
site:bonnyday