Second Annual Fight For Phoebe Memorial Run!

We are hosting our second annual Fight for Phoebe run/walk on Sunday, October 8th. 

This year, we're offering a competitive 5K run along with the Fun Run/Walk 5K. We also have a few surprises as well!

The race day will begin at 7am on October 8th at Severna Park Elementary School. 

Competitive 5K (all ages): $35 (includes t-shirt)
Fun Run/Walk: 
Six and Under: Free
7-17: $15 (includes t-shirt)
Adult (18 and over): $30 (includes t-shirt)
Family rate: $50

The link to register is https://endurancecui.active.com/event-reg/select-race?e=47547753

Orphan Disease Statistics

Came across some sobering statistics about orphan diseases. According to the FDA, orphan diseases are defined as "as a condition that affects fewer than 200,000 people nationwide."

That doesn't sound like a lot, especially with a population of around 300 million people. But that 200,000 number is for each disease. So looking at it in the aggregate gives a more accurate picture of the challenge:

• There are approximately 7,000 such orphan diseases;
• 30 million people in the U.S. alone are living with them--10% of the population. It's estimated that 350 million people worldwide suffer from orphan diseases.
• Put another way, if all the people with orphan diseases lived in one country, it would be the 3rd most populous country in the world.
• 50% of sufferers are children.
• Saddest of all, 30% of those children will not live to see their fifth birthday.

For more information, please check out Global Genes.

We're Proud to Announce...

We’re proud to announce that we’ve incorporated as Fight For Phoebe, Inc, and are now a 501(c)3 tax-exempt non-profit organization.

We want to continue to build upon the community’s support over the past two years and help raise awareness of histio and other orphan diseases.

As you’ve probably seen, our first event—actually continuing our momentum from last year—is the Fight for Phoebe Memorial Run to be held on October 8th. We’re also looking at other events and opportunities. Not only fundraisers, but also community outreach with Be The Match and other groups.

Proceeds from these events will be used to benefit the Matthew and Andrew Akin Foundation, Hospice of the Chesapeake, and other local organizations. We also hope to assist families in need, particularly those dealing with rare and orphan diseases such as hemophagocytic lymphohistiocytosis (HLH).

We'll continue to use this this webpage, as well as our Facebook Group Fight For Phoebe to keep people posted as to our events and outreach.

Save the Date! Second Annual Fight For Phoebe Memorial Run!

Do you know what you're doing two months from tomorrow?

Well now you do!

We are hosting our second annual Fight for Phoebe run/walk on Sunday, October 8th.

Details and online registration will be up soon. Mark your calendars now!