A Critical Need for Black Marrow and Stem Cell Donors Exists

There are currently 23 Black patients waiting for an unrelated stem cell donor in Canada. Many more are waiting worldwide. With the help of international searches, maybe 4 of these 23 Canadians will find a lifesaver. To give you a better idea of the need if these 23 patients were Caucasian, 15-16 would be able to find matches within the international registry as opposed to 4.

Also needed are people of mixed ethnicities meaning if you are Black and Caucasian, Asian, Hispanic, Latino, Native American or any other ethnic combination your participation in the donor program is desperately needed as patients of mixed heritage have an even harder time finding a marrow or stem cell match. Their chance of finding match is even less than 4 in 23.

The range to begin effective matching is 10,000 - 20,000 potential donors. The optimal number of Black donors in Canada is 70,000 - 80,000. As you'll see below the actual statistics are currently less than 2000, a fraction of the range needed to effectively find a match for Black patients in need.

By The Numbers 2010:

New black registrants in Canada between Oct 2009 and 2010: 211
Total Black registrants in Canada in October 2010: 1644

New black registrants in Quebec between October 2009 and 2010: 3
Total Black registrants in Quebec in October 2009: 65

By The Numbers 2009:

New black registrants in Canada between Oct 2008 and 2009: 217
Total Black registrants in Canada in October 2009: 1433

New black registrants in Quebec between October 2008 and 2009: 38
Total Black registrants in Quebec in October 2009: 62 

Where to go in Canada to learn how to join the donor program:
In Quebec: http://www.hema-quebec.qc.ca/
In Canada: http://www.onematch.ca/
In the United Kingdom: http://www.aclt.org/

In the U.S. you can register through http://BeTheMatch.org. If you are a match for a Canadian patient your stem cells can be harvested here in the U.S. and flown to Canada, or anywhere in the world, to help save a patient's life. The truth is that with the exceptions of South Africa and the island of Martinique, most of the countries and islands that where Black ethnic groups are predominate do not have marrow registration organizations (this includes most of Africa) so it's crucial for people of Black ethnicities who want to help and live in countries that do have registries to join them and become part of the international donor pool.

I keep a list on the Helping Tami.org website where you can see if the country you live in has a registry. CLICK HERE to view the international list of registries.

My friend Tamu posted these Canadian statistics on Facebook today. Tamu lost her brother Emru to Leukemia on November 11, 2008. There is a critical need for marrow and stem cell donors but particularly donors who are Black as they are grossly under represented in the national and international marrow registries. This means people from all Black geographic regions including people from Africa and the West Indies (Jamaica, Haiti, Trinidad and Tobago, and Barbados) are needed to be potential donors to patients in need.

Please Vote to Support Kids Undergoing Marrow Transplants

NASCAR driver Jimmie Johnson has a dream to provide financial relief for kids undergoing bone marrow transplants through the Be The Match Foundation. Your vote will decide if his idea is funded by Pepsi Refresh. No registration needed. Just click on the vote button under Jimmie's picture. That's him to the left.

Thanks for any help!

CLICK HERE to vote online

Be The Match on YouTube

Visit Be The Match's new YouTube channel at www.youtube.com/bethematch. There you will find videos about patients, donors, the donation process, and more.

You can help spread the word about the marrow donor program by posting the latest videos to your blog, Twitter and Facebook accounts!

If You Live in California Your Help is Needed

If you've been reading Tami's blog since last year you'll remember Michelle Maykin. Michelle was a beautiful young wife, daughter, sister, cousin and friend to those who loved her most when she passed away last summer while fighting Leukemia. While a bone marrow match was never found for her, the efforts of Michelle and her loved ones helped over 18,000 people to join the National Marrow Donor Program as potential donors. So far four of those 18,000 turned out to be matches for other patients in need. With dedication and passion her mother has been working hard to continue the fight in Michelles name and with the help of a local Sentaor is very close to creating a new law to help people to become donors.

The "Michelle Maykin Memorial Donation Protection Act,” will allow private and public sector employees paid time off for organ or marrow donation. Donors would no longer have to worry about the financial burden of their gift. We know that this will ultimately lead to more registered donors and more lives saved.

Please Sign the Petition

The following post is from Michelle's blog and was written by her sister Melanie on behalf of her family:

It’s been 8 months since Michelle left us and the pain is still raw. There is a huge emptiness inside me and I continue to grieve for what has happened. I hang on to so many of the moments I shared with Michelle, afraid as more time passes that I am leaving her behind.

We continue to honor Michelle’s wishes and are focused on helping patients so that something positive can come from this horrible reality. My mom has been working hard with political leaders and the community to continue helping those in need of bone marrow transplants. In February, Senator Mark DeSaulnier of Concord, CA introduced Senate Bill 1304, the “Michelle Maykin Memorial Donation Protection Act,” that will allow private and public sector employees paid time off for organ or marrow donation. Donors would no longer have to worry about the financial burden of their gift. We know that this will ultimately lead to more registered donors and more lives saved.

HOW YOU CAN HELP

For SB 1304 to pass, it has to go through the legislative process. The next step is for the bill to go through the Senate Labor and Industrial Relations Committee where it is reviewed and then voted up or down. The committee hearing will be held on April 14, 2010. Here is how you can help pass SB 1304 out of the Senate Labor and Industrial Relations Committee and move it to the next step of the legislative process:

1) Sign our online petition to show the widespread community support for SB 1304.

Link for Online Petition

2) Tell your friends and family to sign the petition

3) Fill the room at the Hearing on April 14 in Capitol Building (9:30 am in Room 2040)

4) Spread the word by emailing friends and family with the above message to get them involved. Log onto your favorite networking sites and ask everyone you know to sign the petition or send a letter of support:

Senator Mark DeSaulnier
State Capitol, Room 2054
Sacramento, CA 95814

Passing this bill was something Michelle dreamed about and worried we couldn’t get done. We are now so close but we need you to succeed. With your help, we can save more lives and prevent families from having to go through what mine is struggling with everyday.

Thank you so much for all your support,

Melanie

Link to pre-drafted letter to be signed: Pre-Drafted Letter

Link to detailed Senate Bill 1304: SB 1304 Bill

Project Michelle is a success for patients needing a donor

Back on May 17, 2009, we told you about Michelle Maykin in this blog entry. Michelle is suffering from a treatment resistant Leukemia. We were able to update Michelle's status on July 4th in this blog entry. As you can see, things have become very critical for Michelle.

If there can be any good news in Michelle's story, it is the other patients Project Michelle has been able to help while trying to find a donor for Michelle herself.


As you can see below, as a direct result of Project Michelle's efforts, four patients have actually been matches for others in need and donated their stem cells!! Fifteen others are in the process of being tested to be donors and 110 individuals are possible matches. Those statics are just amazing!! Project Michelle has been able to help so many people in need.

Now, we are praying Michelle is able to find the match she needs. Words are not sufficient enough to thank Project Michelle for all their hard work and dedication.

You can continue to check Michelle's status via her blog.

Roger Contreras hosts his first blood donor drive in Houston, Texas

We have told you in previous blog posts about Roger Contreras. As you will remember, Roger, like Tami, has Myelodysplastic Syndrome. His sister was a perfect match and was able to be a donor for Roger.

This is Roger's latest blog post.

"I have had a catheter in my chest for over four months, it has just been removed and I feel free and liberated. To celebrate my independence I will be hosting a blood drive:

Sunday July 5, 2009
The event will begin at 1 p.m.
Dream Rooms Furniture
8622 Eastex Freeway
Houston,TX 77093

59 North & Loop 610

Jesse Valdez is being so kind as to let us use his location for this much needed event. All donors will receive a custom designed shirt and 10% off any furniture purchase. For more details and information on the fine furniture offer please contact (281) 541-3435.

I am in need of donors so please call me at (786) 281-8316. This is the first time I am hosting a blood drive and I need your help to make it a huge success."

We could not be more happy for Roger!! Gulf Coast Regional Blood Center will be hosting the blood drive.

The need for donor blood is constant and great. The American Red Cross has posted donor guidelines on their website that will help you determine if you are eligible to donate. They also have so many reasons why you should give blood. I feel the most important reason it to help a fellow human being that needs you.

If you live in the Houston, Texas area it would be so awesome if you could come out and support Roger. If you do not live in the Houston area there will be other donor centers in your area. The Red Cross has a simple and easy way to find a center near you.

Posted by Wendy. Learn more about her in this blog post

Being a Potential Marrow Donor

Hi Everyone,

This is Wendy, one of Tami's 2 official bloggers.

As you may have read in a previous blog post, I've been a member of the marrow registry for many years now. I'm an avid viewer of the soap opera Days of Our Lives and they had a story line about a girl that was in need of a marrow donation. She was suffering from Leukemia. At the end of each episode an announcement was made about the need for marrow donors. I also knew someone personally that had donated marrow for a stranger so I decided to become a member of the registry myself. I know it's an odd way of becoming a member but that's how it went. :)

I've been called three times so far as a possible donor. I have friends that have been on the registry longer than I have and have never been called. I guess I've just been lucky to be such a close match to three patients in need of marrow. I've been so excited every time I was called.

My first experience, I was called but I was not the closest possible match. I admit I was disappointed but I was also happy that there were other donors more closely matched to the patient than I was.

The second time, I came very close to donating stem cells. I was the best match for the patient and things started moving very rapidly. The patient was in dire need of a transplant. It is such an amazing and odd feeling to know that you match another person perfectly as if you were siblings yet you are total strangers. I went through all the testing and was set to receive the injections that would help my body produce extra stem cells . I got a call before receiving my first injection that the patient had come out of remission and could not receive the donation. I was told I would be called in the future if the patient needed me but I haven't heard anything and it has been four years now. I think about the patient a lot and wonder what happened.

I recently matched a third patient. I was really hoping the third time was the charm. I received a letter in the mail that said I wasn't the best match for the patient. However, I'm still a possible donor for the patient. If the perfect match is unable or unwilling to donate, I will be called. I sincerely hope that the patient receives their donation from the best match but I'm here and willing to donate if they need me.

I've been lucky to be called upon three times. One of these days I will actually be able to donate. I know it!!

Posted by Wendy. Learn more about her in this blog post.

We are now on Twitter

Yay!!  We have a Twitter.  Anyone who's anyone has a Twitter!  Helping Tami can now be followed on the Twitter website.  If you do not have a Twitter account it is very easy to sign up and free.  You are able to "follow" your favorite actors and friends.  Everyone posts updates as to what they are doing and you can log on to see where your friends are and what they are up to. It's fun and easy.  

Start following Tami's Twitter for all our latest news and up to date information.  If you click on "find people" and enter "helping tami" into the search box on the Twitter website you will be able to "follow" us.

Press Page

We have created a new press page on the Helping Tami website.  As you can see, there are already a few news stories.

The first news story is an article written by Sal Pizarro for the Mercury News about Stacie's help supporting Tami and the website.  It is a great article.  Check it out.

There is also an article written in Mandarin regarding the marrow drive held at the Tech Museum in San Jose, CA.

We also have a great video in Mandarin regarding the marrow drive that was held at the Tech Museum in San Jose, CA

Please check back as we update our press page periodically!!

Fighting MDS and Winning (Update on Roger)

We previously told you the story of Roger Contreras.  As you know, Roger also suffers from MDS and has a website, IHaveMDS.com.  Roger was able to receive a stem cell donation from his sister.  From time to time we would like to update Roger's progress.  

We are happy to report that Roger was able to leave the hospital on April 9, 2009. Roger was placed in a home that is a little less than a mile and a half from the hospital.  He still has to check in at the hospital every morning and the rest of his day is based on the blood test results. Roger is still in danger of contracting pneumonia or graft versus host disease but we are hoping he continues to do so well.

Cafe Press Order

I placed an order with TheHelpingTami.org Gift Shop through Cafe Press last week and it was delivered yesterday by UPS.  I ordered the tote bag which is really nice, the golf shirt, and the dog t-shirt. Now, my dog, Daisy, is not thrilled with wearing clothes, or Halloween costumes, or bandanas but I keep trying.  Daisy is a Labrador Retriever and my daughter tells me too big to dress up.  It seems there is a rule that it's ok to dress a small dog but not a large one.  I personally think Daisy looks adorable.  

She did get treats and I told her it is for a good cause:)  Daisy and I are going to start walking to get the word out!

Fighting MDS and Winning

This photo was take of Roger right before his transplant.

While researching MDS, Stacie came across a website called www.IHaveMDS.com. The Author, Roger Contreras also has a blog.  Roger is a plumber from Texas.  Unfortunately, he was diagnosed with MDS in May 2008.  A major stopping block in Roger's path was the fact that he did not have health insurance.  Roger's blog is an amazing read.  He describes his illness and his treatment at a variety of hospitals (often with a surprising amount of humor, and how having no health insurance had delayed and affected his treatment. The best part of Roger's blog though is reading about his feelings through his ordeal.

This is Roger's actual transplant in progress.

The great news is that Roger was recently able to have a bone marrow transplant that will hopefully save his life.  It was a long, hard road to get to where he is today.  Even though he is healing and still in the hospital, Roger has selflessly agreed to feature Tami on his website and work to help her donor drive as well. As Roger said today in a message to Stacie "right now i have alot of time, and i don't plan on wasting any of it." We cannot even express how much that means to us.

After several days of being violently ill from the chemo used to destroy his marrow to give his donor marrow a chance to engraft, this is Roger finally feeling better and losing his hair a few days later. Here he is a third of the way through having his remaining hair shaved off. 

If you'd like to keep up on Roger's progress you can subscribe to his blog. On the right hand side of his blog you will see a subscription option to receive email updates in your inbox whenever Roger posts a new entry.

Also, Roger sells wrist bands. Until he is able to work again they are his only form of income to assist with his exorbitant medical costs. A great conversation piece, they help to raise awareness about Myelodysplasia with Roger's website url on one side and "Cancer Sucks" on the other.Please CLICK HERE to purchase one of his wrist bands with Paypal. We are requesting a donation of $5 but spreading the word is what's most important so please use the contact page on the website if you'd like a wrist band but can't afford to buy one at this time. Stacie has offered to cover the cost for anyone who wants to help spread the word about Roger's website while her supply lasts.

Postcards and Business Cards

A great way to spread the word about Tami is by handing out postcards and business cards to anyone and everyone you meet.  You can also leave some at your favorite store or restaurant, with their permission of course, so people can take one or at least read the information while they wait.  The great thing is there is no cost to you.  The postcards are 5" x 7" in size and the business cards are a standard 2" x 3.5" in size.  

(front of the business card)

(back of the business card)

The back of the business and postcards contains ways people can help.  Please order yours today and help us spread the word for Tami.  Again, there is no cost to you, just please indicate the quantity you would like when visiting THIS PAGE on Tami's website.

Web Badges to Support the National Marrow Donor Program

Want to help Tami by adding a web badge to your website or blog?

If you CLICK ON THIS LINK it will take you to page where you can copy and paste the code you find there to create an image link that your visitors can click on to visit the HelpingTami.org website. When they click on the image their browser will open a new window.

On Tami's web badge page you can choose from the links below:

LOL Facebook is covered for now...

I received this message from a friend just now:

Oh, Stacie, I forgot to tell you. I invited all my Asian FB friends to your group. Then I figured the more exposure the better and invited everyone living in the US as well, and told them to pass the word. I didn't think you'd mind.

Another friend alerted the Asian diversity club members lists at her company not realizing that sending out such a request was considered Spam. So then she sent out an apology to everyone but was happy she did it because one person messaged her back that he would order the kit and get tested.

SO YAY!

Thank you so much. I have the best friends ever.