Halloween Donor Drive with Be The Match!

Be sure to come out this Halloween to Woods Memorial Presbyterian Church in Severna Park from 10am to 2pm.

This is an opportunity to ask questions and discuss ways to help in the search for a match for Phoebe.

We will be taking swabs for those wishing to join the registry and answering questions to explain the process of the initial registry and what happens if you are a match.

Kids are welcome to attend! We will also have Halloween games and activites to keep kids busy in the next room.

Volunteers are still needed to staff this event, contact us at fightforphoebe@gmail.com

Why Ethnicity Matters for Bone Marrow Matches

"Diversity" has become something of a buzz word in corporate circles; it's used in vision and mission statements, and you'd probably be hard pressed to find a company's core values that didn't reference diversity in some way or another.

When it comes to the National Marrow Donor Program registry, minority donors are significantly underrepresented, as these numbers from bethematch.org show:

• Caucasians have a 97% chance of finding a donor match
• African-Americans have a 76% chance of finding a match
• Asian-Americans have an 84% chance of a match
• American Indians and Alaskan natives 90%
• Hispanics have an 83% chance of a match

There's an excellent article by Hiu Chung So at www.cityofhope.com. It's a good read on why the need for diversity cannot be overstated.

Upcoming Drive in Severna Park!

Things are really moving along!

On Saturday October 31st (that's Halloween!) there will be a donor drive organized by Bethematch.org and Fight for Phoebe at Woods Memorial Presbyterian Church in Severna Park from 10am to 12pm.

Driving directions can be found here: http://www.woodschurch.org/directions

Please come and get swabbed! And bring a friend or two or three.

Upcoming Donor Drive in Beltsville!

There's a donor drive coming up in Beltsville, Maryland this Saturday on October 18th!

This one is sponsored by the South Asian Marrow Association of Recruiters:

Location: 4320 Ammandale Road, Beltsville MD 20705
Date: Saturday, October 18th
Time: 10am to 6pm

Phoebe's Story

Our little girl

Our eight year old daughter Phoebe is a fun, energetic, and engaging girl. She likes taekwon do, cheerleading and kayaking.

Aside from typical childhood illnesses--colds, ear infections, etc--she was a very healthy girl as well. Until late August 2015.

She started third grade on Monday, August 24th. As always she was excited to start school, meet her teacher, and see her friends. She was exhausted when she came home that night; we chalked it up to her being tired from a busy weekend and having gone to day care for the first time and starting school.

This continued the entire week. In retrospect, Phoebe became quieter and quieter--definitely not typical behavior for her. We took her temperature throughout the week but all seemed ok.

That Sunday at a family event she was even more withdrawn--at one point she even went away to lie down. That night she showed a fever of around 101--we gave her Tylenol but early Monday morning the fever returned even higher. We took her to our pediatrician's walk-in hours, who initially diagnosed it as either mono or a mono-like virus.

Throughout the week Phoebe had high fevers but they always went down with Tylenol. Eventually though we took her to our local ER, which after a few hours sent us to Children's National Medical Center in Washington, DC.

Diagnosis and Way ahead

After several days, and many more blood tests, Phoebe was diagnosed with hemophagocytic lymphohistiocytosis, or HLH. This is a rare and potentially life threatening illness where the immune system is defective.

Treatments do exist for HLH. We're lucky at Children's--we have a great team of hematologists as well as other teams working to get Phoebe better. Ultimately, Phoebe may require a bone marrow transplant. 

Here's the kicker--Phoebe was adopted from Korea. Bone marrow matches are difficult enough under normal circumstances--but the bone marrow registry is heavily canted towards Caucasians. There are comparatively fewer potential matches for minorities--Asians included.

We're working to change that--expanding the registry potentially benefits so many that need a match.

Initial Planning for bethematch.org outreach efforts

Thank you for responding back – everyone has reached out on behalf of Phoebe and is willing to work as part of a group.
Everyone has different schedules so I have scheduled two conference calls – this Tuesday at 7pm and this Wednesday at 7pm. 

The call-in information is at the bottom of this e-mail.
The goal of this meeting is to determine everyone’s geographic locations and interests in helping. From there we can determine the group structure and start planning events.

If everyone is able to attend Tuesday’s meeting we will cancel Wednesday’s. Otherwise we’ll use Wednesday’s meeting to review all of the information collected to date.

Please come to the meeting prepared with any goals you might have (ex: you have a local Korean church you’d like to approach about a registration event, you have a contact with a Korean student group at a local college/university, etc.) and questions.
Please feel free to invite additional friends who might be interested in helping.
Let me know if there are any questions. I look forward to speaking with you!

To call into this meeting (audio conference only)
-------------------------------------------------------
1. Please call one of the following numbers:
Local: 1-612-884-8494
Toll-Free: 1-855-343-5149
2. Follow the instructions that you hear on the phone.
Cisco Unified MeetingPlace meeting ID: 924 044 167