28th of August 2019. George is almost 4 months old. We’d spent the best part of two weeks living a nightmare. Watching George struggle to breathe, unable to be weaned off oxygen, confined to a hospital cot. Barely able to leave the hospital room, where the four walls seemed to close in each day. George took everything in his stride. Singing, chatting, flirting with the nurses ... nothing  could wipe the smile off his little face.

When we finally learned of his diagnosis - neuroendocrine cell hyperplasia of infancy, we were relieved. We had an answer. No more sleeping on hospital beds, we would be free to navigate our way through ‘rare disease’ life in the comfort of our own home. 

What caused this? Was it something we did? Unlike some childhood interstitial lung diseases, there is still no known cause for NEHI. What does this mean for George? When will he be ‘better’? Will he ever be better?  The questions were endless ... and unfortunately most of these questions have no answer. And that’s why we need to raise money to support research into NEHI and increase awareness about this condition.

I’ll be riding 116km (72 miles) on June 13th as part of the Million Dollar Bike Ride to raise money for NEHI research. So that we can have answers. So that families across the world can have answers. So we don’t feel like we’re navigating in the dark, so we can have a chance to cure this disease ... because our little NEHI warriors don’t stop fighting, and neither should we!

Thank you for your support! It means the world xxx

NEHI Research Foundation is excited to announce that it has been selected to participate in Penn Orphan Disease Center’s 7th Annual Million Dollar Bike Ride taking place on June 13th, 2020! This is an incredible opportunity for the foundation and its community to raise awareness and fund meaningful research. Learn more about the event at: www.milliondollarbikeride.org

What is it?

This will be the Penn Orphan Disease Center’s (ODC) 7th Annual Million Dollar Bike Ride. While the ODC is dedicated year-round to supporting rare disease this is a once a year opportunity for rare disease groups to work directly with them on their mission. The event normally takes place in Philadelphia, PA but due to the COVID-19 pandemic they will be conducting the event as a virtual ride. Riders will ride in their own communities on Saturday, June 13th to support their respective rare disease groups!

​Why is it important?

As a selected foundation not only will we get to ride in the race and raise awareness for NEHI we will get to partner with the ODC to put out a pilot grant. The ODC will match up to $30,000 for each individual team participating. Not only that, they put out the call for applications internationally then use their in-house scientific advisory board to award the one with the highest scientific merit. The NEHI Research Foundation will set the parameters for what we’d like to support but the ODC does all the work for us. This means that every donation that is made (up to $30,000) will be matched dollar-for-dollar and will be directed to the grant to be issued by Million Dollar Bike Ride. Help support NEHI Research Foundation today and have your contribution go twice as far!