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Hello!

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Be the bone marrow donor for a great kid.

When Evan was three years old, he was diagnosed with a primary immunodeficiency disorder called Chronic Granulomatous Disease ("CGD") after falling ill to multiple bacterial infections requiring hospitalizations. CGD makes Evan especially susceptible to certain bacterial and fungal infections. When Evan was five years old, he was hospitalized again with severe inflammation in his intestines and an infection in his bowels. He was diagnosed with inflammatory bowel disease ("IBD") at the time, and the doctors believe it is associated with Evan's CGD.

Evan currently takes three antibiotics, one anti-fungal medication, steroids, and an antacid daily. He also goes to the hospital once a month to receive an infusion of a medication that helps prevent the recurrence of flares associated with his IBD. We have been told that even with these daily medications, Evan can expect to fall ill to serious infections about once every three years for the rest of his life.

The only cure for CGD is a bone marrow transplant. Evan’s doctors have told us that his best chance of living a long and healthy life is to undergo a bone marrow transplant in the next two years. Because Evan's likely donor is of Chinese and/or Korean descent, and there are so few Asians registered in the bone marrow registry, we are having trouble finding him a suitable match.

You could be the one to change Evan's life!

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Meet Evan!

Evan is an origami aficionado, avid break dancer, Warriors fan, and Harry Potter enthusiast. In his spare time, Evan can be found biking around his neighborhood, engaging in prolific arts and crafts projects, perfecting his "floss" dance moves, playing "cats" with his little sister Audrey, and reading Garfield or a captivating science fiction book.

Evan Climb
Evan Slurpie
Evan Origami
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Evan HP
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What is CGD?

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Evan was diagnosed with Chronic Granulomatous Disease.


CGD is a rare genetic primary immunodeficiency disorder. CGD affects one in 200,000 people in the United States. About 20 people are diagnosed with CGD every year.

People who suffer from CGD have little to no ability to fight off certain bacterial and fungal infections. A few decades ago, this disease was almost certainly fatal, and people with CGD were unlikely to survive past age 10. With the advent of antibiotics, however, people suffering from CGD have lived longer, but not without serious illnesses, including recurrent lung infections and gastro-intestinal problems.

We have been told that Evan is likely to fall ill to a serious infection requiring hospitalization every few years for the rest of his life. These repeat infections can lead to organ damage or failure. People with CGD are much less likely to live a long life, and even those who survive experience a significant deterioration in their quality of life as they get older. Currently, the only cure for CGD is a bone marrow transplant.

You can help!

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Save a Life

Evan has a matched donor out there - IT COULD BE YOU.

Join the registry with a simple painless cheek swab to help cure Evan.

Adding donors to the registry increases the likelihood of finding a life-saving match for Evan and others in need.

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Register to get your
cheek swab in the mail!

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Encourage 10 people to swab or share with your network!

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Organize a bone marrow drive in your community!

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Learn More and Donate to CGD Research!


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FAQ

Am I eligible to join the registry? >

You can join the Be The Match bone marrow registry if you:

  • Are between the ages of 18-60
  • Live in the United States
  • Meet health guidelines
  • Are willing to donate to a patient in need

If you are between the ages of 18-44, you are especially needed because research shows that donations from younger donors lead to more successful transplants. For this reason. doctors request donors in the 18-44 age group 85% of the time.

The easiest way to find out if you meet health guidelines is to start the registration process. (A list can also be found here.)

If you live overseas, please check out the following websites:

Australia: Australian Bone Marrow Donor Registry

China: Chinese Marrow Donor Program

Hong Kong: Hong Kong Red Cross

Japan: Japanese Marrow Donor Program

Korea: Korean Marrow Donor Program

Singapore: Bone Marrow Donor Programme

UK: British Bone Marrow Registry or Anthony Nolan

How do I join the registry? >

To join the Be The Match registry, you will need to fill out a 6 minute survey, open your snail mail letter 3-7 business days later, and swab the inside of your cheeks using a cotton swab - no pain is involved, and doing this is extremely easy. Return the swab kit in an envelope to Be The Match. You only donate bone marrow if someone is a genetic match and presently in need of a transplant. You may be their only hope of a cure.

Is donating bone marrow risky? >

Donating bone marrow is an extremely low-risk procedure.

In the event that your marrow could save a life, you would first have a physical examination and a blood draw to ensure that you're the perfect match and that you are healthy enough to donate.

There are two different methods of donating bone marrow depending upon the needs of the recipient. The majority (80%) of donors donate through a non-surgical procedure similar to a blood draw, which involves injections of a drug to increase the number of cells in your bloodstream for the 5 days leading up to the donation. The other 20% donate with a needle through a hole already in the hip while under general anesthesia, so you will feel no pain during the donation. More information can be found here.

Does the ethnicity of Evan’s donor matter? >

We know that the likelihood of finding a bone marrow match increases substantially along ancestry lines. For Evan, this means that we are looking more heavily for a donor with Chinese or Korean ancestry, though his match may or may not end up being Asian. We also know that many other groups are severely under-represented in the bone marrow registry, resulting in low odds of finding a donor. We are in this to help Evan and all children who need a life-saving match. For more information about why it is important to find a “match,” click here.

Can I still help if I'm not Chinese or Korean? >

Yes! We don't know whether you will be Evan's match until you join the registry. Also, if you aren't a match for Evan, you might be able to save someone else's life. (Likewise, maybe Evan's match will have joined the registry through a different campaign, in honor of someone else’s loved one. Generosity begets generosity.)

Will I lose bone marrow by donating? >

No. Donating bone marrow is not like donating an organ that you don't get back. Your cells replenish themselves in 4 to 6 weeks. Because only 1 to 5% or less of your marrow is needed to save a patient’s life, your immune system stays strong.

What is the recovery time after bone marrow donation? >

Marrow donors should expect to return to work, school and most other activities within 1 to 7 days. Your marrow will return to normal levels within a few weeks.

Who covers the costs of bone marrow donation? >

Donors between 18-44 years of age never pay for donating and are never paid to donate. All medical costs for the donation procedure are covered by the National Marrow Donor Program, which operates the Be The Match Registry, or by the patient's medical insurance, as are travel expenses and other non-medical costs. If necessary, paid time off from work (including recovery time) is also covered by Be The Match, if not covered by your employer.

What if I'm already on the registry? >

First, please confirm. Second, if you are on the registry, make sure that they have your most up to date contact information! If they cannot reach you and you are a match, all you are giving is false hope. They must be able to reach you.

You can check if you are registered with Be The Match by calling 1 (800) MARROW-2.

What if I'm ineligible to register - how else can I help? >

There are many ways you can help even if you cannot register.

Spread the Word

Finding Evan's match is like winning the lottery. It is highly unlikely that any one lottery ticket would win. But the more lottery tickets that exist the more likely SOMEONE will win. It is all about the numbers. If everyone who comes on this website recruits 10 people to join the registry, and each of them in turn recruit 10 more people to join, you all will be giving Evan and thousands of other patients who need bone marrow transplants a fighting chance. Click on "Spread the Word" above to see how you can do this easily.

Host a Drive

You can also help by assisting us in hosting bone marrow drives at your work, school, or place of worship. All we need you to do is get us in contact with someone at your organization who is willing to set a date, help publicize, and provide a table and two chairs. Be The Match or the Asian American Donor Program will send representatives to man the table and provide all the necessary information to potential donors. Click on "Host a Drive" above for more information.

Donate

Since Evan's diagnosis, there have been a couple of organizations that have helped us navigate his disorder. The first is The CGD Association of America, which provides support and assistance to patients suffering from CGD. Individuals and doctors associated with CGDAA have provided medical advice and helped connect us with other patients so we can better understand the condition and what we can expect for Evan. The second is the Immune Deficiency Foundation, which provides support to patients who suffer from all types of immune deficiency diseases, including CGD. A donation to either will help spur research in the field to help us find a cure for these types of life-threatening and limiting diseases. Click on "Donate" above for more information.


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