Frequently Asked Questions
What can I do to help?
Get Tested
Order a free, at-home cheek swab kit from Be The Match. This will register you as a donor with Be The Match, which is a member of the World Marrow Donor Association, so you can be matched to any patient from anywhere in the world.
If you know someone whose preferred language in Chinese, they can register here: https://www.aadp.org/roar4ray
Spread the Word
Help us get the word out. We are hoping to type 100,000+ potential new donors of all ethnic backgrounds. The more we type, the more patients in need of a bone marrow donor will have a chance! Follow along on Instagram and use hashtag #roar4ray to spread the word.
Donate & Support XLP2 Research
Please consider donating to support the XLP2 Research at the The Diagnostic Immunology Laboratory co-directed by Dr. Rebecca Marsh. Cincinnati Children's leads the field with primary immune deficiency research and new treatment trials for XLP2.
You can also donate to Be The Match to help them continue to connect patients to the life-saving marrow transplants they need.
Can I register to be a donor if I don't live in the US?
Yes! While the Be The Match registry is specific to US residents, there are registries around the world you can join. Be The Match searches all international registries when conducting their patient searches.
UK Registry: www.anthonynolan.org/Roar4Ray
Canadian Registry: https://www.blood.ca/en/stemcells
Global database: https://share.wmda.info/display/WMDAREG/Database
Enter your country name and look for organization type DR (donor registry) and you can register through that organization.
Host A Drive
If you’d like to host a drive, please complete the interest form here: https://bethematch.org/support-the-cause/participate/help-grow-the-registry/
How do I get typed? Does it hurt? How much does it cost?
Getting tested to see if you are a bone marrow match is literally as simple as getting a cheek swab. It’s easy, fast, painless, and free. This simple act can save a person’s life—someone’s child, parent or sibling—possibly someone suffering from leukemia, lymphoma, or a condition like Ray’s.
If you are a match, you are that patient’s last hope for a cure. Please say “Yes” to donating bone marrow.
What is XLP2?
X-linked lymphoproliferative disease 2 (XLP2) is an extremely rare genetic disorder that causes the immune system to overreact to infections. Patients affected are at risk for many diseases and health problems, including HLH (hemophagocytic lymphohistiocytosis), a rare and life-threatening disorder of the immune system. The condition is often undiagnosed, further complicating treatment.
Why is it so hard for Ray to find a match?
It is harder for Ray to find a bone marrow match because he is multiracial. Ethnic background matters when it comes to finding a match. He has Chinese/British/Italian heritage. All too often biracial or multiracial people have a hard time finding matches for their bone types because there are fewer of us in the world. We hope our friends and community can gather around and give to each other and to Ray, the biggest gift one can offer: the gift of life.
What diseases can I help cure if I am a match?
Bone marrow donors are needed to help patients battling life-threatening blood cancers such as leukemia and lymphomas, blood diseases like sickle cell or aplastic anemia and genetic disorders affecting the immune system, including HLH and XIAP.
A full list of blood cancers like leukemia and lymphoma and life-threatening blood diseases like sickle cell, aplastic anemia and 70 other diseases can be found here: https://bethematch.org/transplant-basics/how-transplants-work/diseases-treatable-by-transplants/
For more information, please check out:
X-Linked Lymphoproliferative Disease 2 (XLP2)