Like all of us, the COVID pandemic, turned our world upside down.  Thankfully, as parents of two NEHI Warriors, we have had years of social distancing practice. We have canceled trips, birthday parties, playdates, and family gatherings due to illness and the fear of illness. We have used caution in allowing the kids to participate in extracurricular activities including daycare / preschool. The same caution applies to shared play spaces (e.g. indoor playgrounds), which the kids dislike. We are used to carrying hand sanitizer wherever we go and using it in abundance. I have carried a can of Lysol in my car and sprayed down shopping carts before we have used them for years. Our hands, no matter the season, are raw from all the hand washing. However, to see all the sacrifices that others have made in these past months to keep those vulnerable safe and healthy during this time brings joy to our hearts.

Because of our NEHI Warriors, we have lived and will continue to live in a cautious manner, yet, we do not and cannot live in a bubble. Riley (5.5 years old) will start kindergarten this fall and cannot wait! She is anxious to get back to gymnastics and wants to try "ninja class". Spencer (3 years old) will be starting preschool soon - his first time away from the house. We are excited to watch him grow!

As we all move into our "new normal", the need to fund research to find answers for the many questions we have about NEHI becomes even more important. Without understanding the cause of NEHI or developing better treatment options (as opposed to just symptomatic ones), our NEHI Warriors will continue to be a vulnerable population.

Thank you for supporting us!

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!