One week out!

We're just a week out until our next fundraiser at MOD Pizza on December 7th (Phoebe's birthday)!

All proceeds will be donated to Hospice of the Chesapeake to help buy gifts and gift cards for families using pediatric hospice services.

Remember, you just need to have a print or digital copy of the flyer on the left on December 7th!

If you're not able to make it, we're also accepting donations via Pay Pal!

Just 10 Days out until Next Fundraiser!

We're just 10 days out until our next fundraiser at MOD Pizza on December 7th (Phoebe's birthday)!

All proceeds will be donated to Hospice of the Chesapeake to help buy gifts and gift cards for families using pediatric hospice services.

Remember, you just need to have a print or digital copy of the flyer on December 7th!

If you're not able to make it, we're also accepting donations via Pay Pal!

Donate through PayPal to support Pediatric Hospice!

We hope many of you are planning on joining us on December 7th for our Fight For Phoebe Fundraiser at MOD Pizza at Severna Park benefiting Hospice of the Chesapeake.

If you cannot attend but would like to donate to the fundraiser, you may use the PayPal link below. All donations are tax deductible. All money raised will be used to purchase gifts and gift cards for families using pediatric hospice services this holiday season.

Fundraising Event at MOD Pizza in Severna Park!

December 7th is Phoebe's birthday. She would be turning 11.

In honor of her birthday, we're holding a fundraising event at MOD Pizza in Severna Park that Thursday, December 7th.

All proceeds from this event will be donated to Hospice of the Chesapeake’s Chesapeake Kids program. They will use the donated funds to buy gifts and gift cards for those in pediatric hospice care, both children and their families.

Please help us spread the word and mark your calendars for Thursday, December 7th. The event will run all day.

Please print the image or just have it available on your phone. Tell them at the register that your order is being placed for the Fight for Phoebe fundraiser-easy as (pizza) pie!

The flyer can also be found here.

Thank you for a successful event!

We are very thankful to the Fight for Phoebe community and all of our supporters and volunteers that came together to make this day so amazing!
We were fortunate that the skies didn't *totally* open up today as we held the run/walk in Phoebe's memory.

When you walked into our school's auditorium there was so much to choose from-getting a penguin tattoo from Severna Park Veterinary Hospital, having fun turquoise hair sprayed or braided by Hair Cuttery staff, enjoying the music provided by 107.3 FM, face painting (loved the turquoise mustaches!), kindness rocks, and of course the photo op with Winnie the African penguin from the Maryland Zoo.

We hope you all enjoyed it as much as we did-we are already planning what we can add next year! Thank you for your support!!!

PENGUINS! CRAZY HAIR! KINDNESS ROCKS!

Fun events are planned for Phoebe's run. Have YOU registered yet? 

Register by SUNDAY, SEPTEMBER 24th so that your run packet will include a micro-tech shirt featuring Phoebe's drawn penguin.

*Shirts not included for the under 6 runners and Family rates, but can be added during registration until Sunday. 

Don't miss out!

https://endurancecui.active.com/event-reg/select-race?e=47547753

Just about three weeks out!

Just three weeks until the 2nd Annual Fight For Phoebe Memorial Run!

There's still time!

Click on the image to register.

September is Histio Awareness Month

September is Histiocytosis Awareness Month. Histiocytosis is a general name for a group of disorders or "syndromes" that involve an abnormal increase in the number of immune cells that are called histiocytes. Hemophagocytic Lymphohistiocytosis (HLH), which Phoebe had, belongs to this group.

Proceeds from the Second Annual Fight For Phoebe Run will go towards the Matthew and Andrew Akin Foundation, dedicated to raising awareness of this brutal disease.

Register here for the run!

Register Now!

by ACTIVE Network

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!