News story about Tami and her donor Scott

CLICK HERE to read the entire article

The Wish Upon a Wedding Shining Star Award

Hi Everyone, this is Stacie (Tami's cousin who posts for her in this blog and keeps the Helping Tami website up to date) here. Some of you may not realize that for the past 13 years I have been self employed working in the Northern California wedding industry. Wish Upon a Wedding (a wedding wish granting non-profit that gives weddings to terminally ill patients) wanted to recognize the volunteer efforts individuals within the wedding industry make in the hopes their stories may encourage more people to get involved in volunteerism.

The Shining Star Award

The Shining Star award is their way to thank and pay tribute to the professionals who, by their demonstrated commitment and example, inspire others to engage in volunteer service. The Board of Directors of the Northern California chapter of Wish Upon a Wedding selected three individuals to recognize.

Recently I attended the Blissful Wishes Ball. I, along with my colleagues Gustavo Fernández (who created Hogs for Kids and volunteers for Now I Lay Me Down to Sleep and Rich Amooi (who supports Second Harvest Food Bank and Humane Society of Silicon Valley) were all given recognition for our commitment to community service, volunteerism, and the advocacy work we do. We were told one of us would be awarded the Shining Star award at the gala...

And I'm very honored to be able to say I was given the award for the work I've done supporting Be The Match (The National Marrow Donor Program) through my www.HelpingTami.org and www.MarrowDrives.org websites. Thank you so much to founder Liz Guthrie and the Board of Directors for the recognition. When you do volunteer work you don't expect anything back so it means a lot that others feel what I am doing is worthy of such an honor.

Here's the thing though, to me this really is an industry award meaning I feel it recognizes most of my friends in the wedding industry including Rich and Gustavo. While some of us may have created ways to support causes or we volunteer to help existing organizations on a regular basis, almost all of my friends donate their time and services several times a year to their friends, colleagues, local schools, non-profits, foundations and engaged couples who can't always afford the wedding they deserve. There are also many unsung heroes in the special events industry who donate their time, energy and money to help others but choose not to publicize what they do so I want to share this award with all of them as well.

If you've never volunteered before I encourage you to consider finding time in your busy schedule to help others. Whatever your strengths and passions are there is most likely some non-profit, foundation or community service organization that would appreciate your help. From granting wedding wishes, to helping at a bone marrow donor drive, mentoring programs, hospitals, hospices, soup kitchens, food banks, animal shelters, literacy programs, building houses, community gardens and fundraising there are countless way you can reach out and help others who, for one reason or another, aren't able to help themselves. www.VolunteerMatch.org is a great place to start. Just go to their home page, drop in your zip code and a list of local organizations that need your help will pop up. It's that easy to find out who needs you.

If you would like to help me by supporting Be The Match please visit Helping Tami.org to learn how you can become a marrow or stem cell donor. It was through the generosity of an anonymous donor that my cousin's life was saved. You might be able to help save a life too.

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.

Long Beach Be The One Run Nov. 6th

Long Beach, CA – Long Beach will host Be The One Run™ on Saturday, Nov. 6, 2010 at Shoreline Village at Marina Green Park. With a 5K, 1K Fun Run, and Tot Trot, Be The One Run is a perfect family activity, and people of all fitness levels can participate. The public is encouraged to participate by registering for the race, fundraising and/or volunteering at the event.

Every year 10,000 patients with disease like leukemia, lymphoma and sickle cell anemia need a marrow transplant but have no donor match in their family. They depend on Be The Match® to help them find a potential marrow donor and receive the transplant they need. For many, a marrow transplant is their best or only hope for a cure.

Every step participants take helps patients receive the marrow transplant they need, when they need it.

Be The One Run, Long Beach raises funds to add more members to Be The Match Registry®, increasing the chances that more patients will find a match.

Register today for the Be The One Run or support a runner or walker with a contribution. Visit BeTheOneRun.org to register, fundraise or to volunteer during the event.

Race Does Matter

I spent my childhood being taught that race doesn't matter and my entire adult life (up until 2009) believing that it doesn't. Believing that "seeing" people only as a color or race was somehow equivalent to discriminating. But when it comes to bone marrow and stem cell transplants, race does matter. More specifically there are certain HLA markers in our DNA that determine whether or not our marrow can be a match for a patient in need of a transplant to save their life. And these matching markers are usually found within ethnic groups.

Since 70% of the thousands of patients in need of a transplant won't find their matches within their immediate family, being willing to donate to a stranger in need also matters. Caucasian patients have an 85% chance of finding an anonymous match in the registry while minority ethnic groups have less than a 30% chance. So race matters. More people from every minority ethnic group and people who are of mixed ethnic groups are desperately needed to join the donor program. Because of the rigorous transplant and recovery process most transplant recipients are children and young adults. To see them lose their lives when they are just getting started is heart breaking.

Nick Glasgow was only 28 years old when he passed away.

The one year anniversary of Nick Glasgow passing away is approaching. After facing almost impossible odds of finding a match in the National Marrow Donor Program registry, because he was part Caucasian and part Japanese, Nick and his family and friends launched one of the largest and most successful donor drives I have personally witnessed. They found Nick not one but two perfect 10/10 matches. Sadly, the cancer was too strong and reoccurred, the transplant failed and Nick succumbed to the Leukemia leaving his family and friends far too soon. He was only 28 years old :(

His family and friends have continued to honor his legacy by doing their best to enlist more donors into the Be The Match registry. They are particularly interested in asking people of mixed ethnicities as people of all mixed ethnicities are severely under represented in the donor registry. If you would like to become a potential donor there are many donor drives that take place around the Bay Area each week.

To find a drive nationwide please CLICK HERE to visit Be The Match.org

This weekend you can register to become a Life Saving Stem Cell-Bone Marrow Donor at the Great Mall in Milpitas, CA

Saturday, October 23, 2010
11:00 AM - 3:00 PM
447 Great Mall Drive
Milpitas CA 95035
The drive will be located at the 4b entrance at the mouth of cut-through near the food court.
_________________________________

To view more details about any of the following Bay Area drives hosted by the AADP CLICK HERE

October 22 2010 Skyline College, San Bruno
October 23 2010 Great Mall, Milpitas
October 23 2010 Chinese Software Professional Association, SJ (PRIVATE)
October 24 2010 San Jose Gurdwara, San Jose
October 24 2010 Navratri Hungama
October 24 2010 Dia de los Muertos Festival, Oakland
October 26 2010 Smart Modular, Newark (PRIVATE)
October 26 2010 UC Berkeley, day 1, Berkeley
October 27 2010 UC Berkeley, day 2, Berkeley
October 27 2010 Boston Scientific Corp.,San Jose
October 28 2010 UC Berkeley, day 3, Berkeley
October 29 2010 Japanese Community Youth Council Halloween Party, SF
October 30 2010 Mexican Neighborhood Shopping Center, San Mateo
October 30 2010 Cumberland Daly City Church, Daly City
October 30 2010 Mexican Neighborhood Shopping Center, San Mateo
October 30 2010 People’s Baptist Church Health Fair, Oakland
October 31 2010 Tzu Chi winter health fair, San Jose
November 02 2010 De Anza College, day 1, Cupertino
November 03 2010 De Anza College, day 2, Cupertino
November 04 2010 De Anza College, day 3, Cupertino
November 05 2010 Milpitas Police Department
November 07 2010 Presbyterian Church, SF
November 08 2010 CCSF, day 1, SF
November 09 2010 CCSF, day 2, SF
November 12 2010 Milpitas Police Dept, Milpitas (Open to public)
November 15 2010 AT&T, San Ramon (PRIVATE)
November 15 2010 AT&T, Pleasanton (PRIVATE)
November 16 2010 Stanford University, day 1, Palo Alto
November 17 2010 Stanford University, day 2, Palo Alto
November 30 2010 Santa Clara Valley Water District, San Jose
December 05 2010 St. Elizabeth Catholic, Oakland
December 27 2010 West Coast Chinese Christian Conference
December 28 2010 West Coast Chinese Christian Conference

Dine at Chili's on Monday Sept. 27th, 2010

www.createapepper.com
Dine at Chili's on September 27 and all profits go to St. Jude Children's Research Hospital®.

I know where I'll be eating on Monday. Dining for a cause! This is Chili's nationwide (and in Puerto Rico) fundraiser for longtime charitable partner, St. Jude Children's Research Hospital(R) in an effort to raise $50 million in 10 years to support the St. Jude mission of finding cures and saving children.

Introducing Tami's Stem Cell Donor!

I'm sure you've all wondered at least once or twice: Who is Tami's donor?

This is Scott, the person who gave Tami a second chance, literally saving her life, by donating his stem cells to her. Scott joined the marrow donor program registry in 1994 and was quite surprised when he was contacted in May of 2009 and told he was a potential match for a patient in need.

Statistics held true. It's said that most patients will find a match within their own ethnic group. Scott is part Japanese but also part Native Hawaiian and Chinese. And even though he is multi-ethnic, he was a perfect 10/10 match for Tami who is of Japanese descent.

Scott's story about how he became involved in the National Marrow Donor Program began years ago with a little girl, stricken with Leukemia, named Alana Dung. In his own words by email he said:

I can't help but think how crazy it is, that if I didn't see Alana Dung's donation poster at campus center at University of Hawaii at Manoa when I was 19 years old, I would have never gone up to the donation booth and registered. Fast forward now 15 years and it has made a difference. How incredible.

Adelia Dung hugs daughter Alana.
Photo by Alvin Chung from the Star-Bulletin

Little Alana Dung lived in Hawaii, had Leukemia and was 3 years old when she passed away after relapsing following a bone marrow transplant from an anonymous donor in Taiwan. Her family has since created the Alana Dung Foundation "To encourage research efforts by providing financial support to worthy research organizations and individuals throughout the world for clinical studies and research directed at improving the quality of life for sick children, improving treatment and preventing disease" as her legacy.

I actually heard about Alana when I was working on creating Tami's donor drive effort. When Alana's parents were told she would need a marrow transplant the state of Hawaii literally rose up to save her. Over 30,000 people joined the registry in 2 months time. That is a phenomenal number based on both the total quantity and speed the registrations were gathered in. Of the 30,788 people who joined the registry to try to help Alana, one (Scott) would go on to help Tami overcome Myelodysplasia by donating his stem cells to her 15 years later.

Mokumanamana and the "Tourist" Hawaiian Islands

Scott, a doctoral candidate in archaeology at the University of Hawaii, says the timing of the donation request posed a potential conflict. He was about to depart on a field work expedition to Mokumanamana (aka Necker) Island, (a very small, remote and inhospitable island) many miles from the Hawaiian tourist destinations most of us are familiar with.

After talking to trusted friends and family members Scott ultimately followed his desire to help others in need and decided he wanted to give the donation. But he was concerned about the timeline and wanted to give the donation as quickly as possible so he would have more recovery time before leaving on a 21 day "Survivor" like research marathon on Mokumanamana Island .

Doctor's had first considered a bone marrow donation rather than a stem cell donation for Tami but due to Scott's upcoming field work, and the possibility of lingering soreness at the donation site if he gave marrow, Tami's doctors decided to do an adult stem cell donation instead (aka PBSC or Peripheral Blood Stem Cell). This meant that Scott took a medicine called filgrastim for several days to stimulate the marrow production in his bones, causing stem cells to be released from his bone marrow into his bloodstream to be harvested.

Stem Cell Donation Day!

While the Be The Match website says:

PBSC donors can expect to experience a headache, or bone or muscle aches for several days before collection, a side effect of the filgrastim injections. These effects disappear shortly after collection. Most PBSC donors report that they feel completely recovered within 2 weeks of donation.

Scott said the only side effect he experienced was that he was tired the rest of the day and slept a bunch but felt almost normal by the next morning.

Scott's fiance was at his side the entire day. He said it was great to have her there because he was supposed to keep his arms outstretched and clench two tennis balls, one in each hand, to help his blood circulate. So when his nose and face itched, she scratched it for him.

From Hawaii to Seattle... Scott's Stem Cell Donation arrived at Fred Hutchinson for Tami's transplant. This is how the majority of transplants take place, with the donor and patient living in separate cities and even countries. The stem cells can be flown to the patient's location so even international donations are extremely common and now comprise at least 50% of the transplants that take place.

You may recall that Tami's Transplant Doctor said that she received a "very good dose of stem cells." When Tami told Scott this he laughed and said they kept him on the apheresis machine (a type of centrifuge that separates the stem cells from the rest of the blood) for 8-9 hours. I've read most people are on the machine for around 4 hours at a time and may be asked to donate over the course of 1-3 days. He said they kept looking at him and he was doing so well and felt so good that they kept him on apheresis for twice the normal amount of time. The machine works by removing blood from one arm, running it through the separating machine, storing the stem cells and returning the rest of the blood back into the donor's other arm.

Post Donation with Nurse Betty at the outpatient clinic.

Says Scott:

Giving bone marrow/or stems cells is a really important thing to think about on so many levels. It's a part of your body, the very essense that creates blood and life in you. The donation process is also complicated by the fact that the recipient is anonymous. Very little information is given about the person to protect their privacy. It makes it very hard though to connect in a meaningful way to the person and struggle, and really assess what your true feelings are about the situation...

I think on a really basic level my first instinct is to help people, so I decided I had to try and do this before I left on my trip...

Scott and his family.

To finally have a face and a name and know that Scott is the person who saved Tami's life was quite overwhelming. I felt ecstatic and elated then broke into tears when I first saw him in a photo. It was like gaining a new family member but no one had a baby or got married. Such an unusual circumstance.

Our family can never thank Scott enough for his altruism and compassion. We would like to thank him for giving Tami back her health and her future. With the deepest gratitude I also want to say thank you for giving her back to her friends. She means so much to so many people, many of whom I've met in person, spoken to on the phone or have emailed with since her diagnosis. The way everyone has reached out to help her from her colleagues (past and present), neighbors, childhood friends and even people who don't know her but feel connected to her through her website and blog, has been overwhelming at times, in a great way. We realize and appreciate that it's because Tami is such an incredible person that so many people have made such incredible efforts to help her along this past year and a half.

Someday I'm certain I'll be creating a blog post with photos of Tami and Scott meeting in person for the first time. Until then, please continue to let others know about this blog and Tami's website. Please encourage them to consider joining the National Marrow Donor Program. Like Scott, they may one day be able to give someone the gift of life. How many of us are ever afforded such an opportunity? I joined the registry in 1995 and am still waiting for my phone to ring.

When I asked Tami if she wanted to include a personal message to Scott in this blog post she said absolutely. And here it is:

September 21, 2010

Dear Scott,

In February 2009, when I was diagnosed with Myelodysplastic Syndrome (MDS), I first asked what MDS is. I had never heard of the disease and we didn’t have a family history of the disease or leukemia. My doctors informed me that they’re not sure what causes the disease, but what they did know was the only way to cure the disease was to undergo a stem cell or bone marrow transplant. When I began to research the disease, I couldn’t believe it. I also couldn’t believe when the doctors said that I would need to find a donor and that the statistics for matching people of Asian descent was low. I thought how would I ever find anyone? I still to this day was amazed that three matches were found for me. I remember the Seattle Cancer Care Alliance Hospital (SCCA) letting me know that two of the three people were contacted but the best match was the first, an Asian male in his 30’s in the US. When I received my transplant last June 2009, they told me that the stem cells had to be flown into Seattle so I knew the donor wasn’t from Seattle, which has a large Asian population. To this day, I thought it will be someone in California.

So, June 30, 2010, one year post-transplant, I requested the form to fill out to learn the identity of my donor. I still remember the paperwork that I was given at the SCCA warning me that I may not ever know the identity as some people don’t reveal who they are. They also warned me that the person may be so different from me and wouldn’t want to be contacted. The only thing I thought is that I’m filling out the form and taking the chance that I would get to meet the person someday that saved my life. All I ever wanted to do was to thank him for giving me another chance.

Well August 27th was an amazing day for me. I received the letter from the SCCA informing me my donor was you and that you were from Honolulu. I thought I can’t just call you out of the blue so I’ll email you first hoping you would respond. You did. I then called you that night and you were everything that I imagined the person could be all these months. I could tell you are an extraordinary, considerate, and thoughtful person with a heart of gold. These past days emailing back and forth have been amazing and all I can say is that I can’t wait to meet you, your fiancé, and family in person. My family and I are looking forward to spending time with you in Honolulu. I'm hoping that more people can read our story and will hopefully generate more donors like yourself. I still can't believe its been 15 years since you donated at Alana's drive.

Thank you so much for the gift of life and for becoming a special person in my life.


Tami

And a few more people who wanted to say thank you to Scott! They include some of Tami's incredibly supportive colleagues, friends of the family, and some of my friends here in California and nationwide. I'll be creating a "Thank You Scott" photo album so If you would like to send a thank you picture to add to it please make one and email it to photo@helpingtami.org

Some of Tami's colleagues who, no joke, may be some of the most, if not the most supportive colleagues ever! Not only did many join the registry on her behalf, they held fundraisers, brought food by the house and did all kinds of things that made things easier for her and her family during this very difficult time. And it wasn't just her local colleagues who pitched in. It was a huge amount of love and concern from employees nationwide who reached out and did all they could to support her.

More of Tami's Colleagues

Friends at Flextronics

Family friends who wanted to thank Scott personally...

And a friend who recently moved to the islands giving a classic Hawaiian greeting!

Click Image to Enlarge

Besides asking me how Tami was doing each week, many of the people in this photo joined the registry on Tami's behalf and many helped out (hands on) with the donor drive effort here in California. Beside me are my friends Jewel and Chuck Savadelis who shot the PSA video at the donor drive at the Tech Museum last year. Maureen in the front left volunteered at the same drive. George, to the right of Chuck actively supports the Leukemia & Lymphoma Society. Loretta (peeking out from the center of the back row), Keith (third from the right in the second row), and John (to the right of Keith) all helped to produce the What's up Wit' That episode about Bone Marrow Donation that won the Wave Award last year and aired nationally on Public Access TV. And Keith, Loretta and John all volunteered at the Tech Museum donor drive. You can see John holding a sign in the video and Loretta sitting at the swabbing table.

People who know me well know I have a bunch of dog loving friends who I met years ago on Dogster.com. They were really a pillar of support to me when Tami was first diagnosed and throughout the time since. Over the years they have become like family to me and they in turn took an interest in Tami's illness as if she were their family too. In tribute to Scott they made these pictures to thank him for donating his stem cells to Tami...

Ming and Dottie. Dottie's owner thought for sure the photo would be of Ming calmly posing with his sign on and Dottie reaching over and eating Ming's sign. LOL

Rosie says Thank You Scott!

Daisy's owner, Wendy, was the person who helped me to maintain this blog back when we were posting every day with updates about how Tami was feeling and doing. Wendy has been a longtime member of the National Marrow Donor Registry and has been contacted on several occasions as a potential donor. So far she has not had the opportunity to make a donation to a patient in need as better matches were located in two instances. Sadly, the one patient she was the best match for became too sick to receive a transplant.

And this is my pup Kitai who was very happy to pose for this picture.

So Thank You to Scott from all of us! The debt of gratitude is immense and can never be truly expressed. We look forward to one day thanking Scott in person for his selflessness and hope his story will inspire others who have been afraid to join the marrow registry to go ahead and sign up. Maybe they will also be able to save a life someday.

CLICK HERE to learn how you can join the marrow donor registry in person or using a mail in test kit!

An update from Anh who also suffers from MDS

Friends,

My family and I want to thank you for all of the love and support you have shown us over the last year. Words will never be able to adequately express our gratitude.

An update and good news are in order.

With regard to my health, last summer’s bleak situation has significantly improved. I am responding to medication, my blood counts are up, and I have not needed a transfusion since January. I am working my full office schedule and going to the gym every day. Even though I still have MDS, the future looks positive.

While we have not found a match for me, the work we have undertaken together has been nothing short of remarkable. We have added approximately 10,000 new donors to the National Marrow Donor Program’s Be The Match Registry. Every one of these donors gives hope to those who need a transplant now, and to those who may be diagnosed with a blood cancer in the future. In fact, we know for certain that three people we registered have matched and donated to persons needing a transplant. That means we have saved three lives in addition to potentially many more in the future!

Our efforts have attracted the attention of the media, in particular People Magazine. I was flattered to have been recognized by People as one of their “Heroes Among Us.” Through October 8, the magazine is conducting an online vote for its “Hero of the Year.” The winner will receive a $10,000 donation from OnStar to be directed to the charity of the winner’s choice. If we win, we would direct the money toward further donor registration efforts. You can vote as often as you would like (no registration necessary) at www.people.com/readerhero.

Simply put, I am not a hero -- we are all heroes. We are all heroes for registering ourselves and encouraging others to Be The Match for someone in need. Together, let’s continue to save lives and provide hope.

With all best wishes,

Anh

Read the entire People Magazine article about Dr. Anh Reiss by CLICKING HERE

Michelle Maykin Memorial Donation Protection Act (SB 1304)

Cross posted from Team Matthew's Blog:

Call for HELP/ACTION!!! Please help out by passing this message along to your friends and family.

The California legislature recently passed the Michelle Maykin Memorial Donation Protection Act (SB 1304), which is a great victory for its supporters who told their state representatives of this Act’s importance. Now, we need your help in asking Governor Schwarzenegger to sign this bill, which would require all California employers to allow paid leave to anybody who donates their marrow. Until now, work obligations or inability to obtain the necessary time off were one of the largest causes of donors being unavailable to give marrow. The legislation includes the following provisions:

• All California employers will be required to grant an employee a leave of absence up to five days to donate their marrow to another person


• Any period of time taken from work to donate marrow will not be considered as a break in continuous service for the purpose of his or her right to salary adjustments, sick leave, vacation, annual leave, or seniority.


• During any period an employee takes leave to donate, the employer shall maintain and pay for coverage under a group health plan for the full duration of leave.


• An employer may require an employee to take up to five days of earned but unused sick or vacation leave for bone marrow donations, unless doing so would violate the provisions of any applicable collective bargaining agreement.

Please tell the Governor to quickly sign this important legislation, as for every person who called to donate but are unable to, there is a patient who is less likely to receive a life saving transplant. You can send an email to him at http://gov.ca.gov/interact#email or contact him at:

Governor Arnold Schwarzenegger
State Capitol Building
Sacramento, CA 95814
Phone: 916-445-2841
Fax: 916-558-3160

Below are some possible talking points that you can include in your letter to the governor. Include them but, if possible, you should also make your message personal. Tell the Governor what marrow donation has meant in your life and why you believe that this legislation is important. This chance to share your story is a very convincing message to the Governor.

Talking points:

• I support the Michelle Maykin Memorial Donation Protection Act, SB 1304, because it will reduce barriers to marrow and organ transplantation by increasing the likelihood that a matched donor is able to donate.


• Each year, 10,000 people are diagnosed with life-threatening diseases such as leukemia and lymphoma which can be treated with a bone marrow transplant.


• Many patients with blood-related diseases search the national Registry of adult volunteer marrow donors to find an unrelated matching donor for transplant. An unrelated transplant may be their best and only hope for a cure, as most people do not have a matching donor in their family.


• Matched marrow donors are often required to miss a few days of work to complete their donation and SB 1304 would make the decision to donate easier by eliminating the potential financial burden caused by missing work.

Want to run a 5K or a 1K for a great cause?

The "Be The One Run" (hosted by "Be The Match" aka the National Marrow Donor Program) is a walk and run event for people of all ages and fitness levels. It includes a 5K, a 1K and a 25-yard Tot Trot. Be The One Run unites communities nationwide determined to cure patients with diseases like leukemia and lymphoma. Every step you take helps patients receive the marrow transplant they need.

Race locations and dates
Be The One Runs will be held in:
Atlanta, Saturday, Oct. 30, 2010
Long Beach, Calif., Saturday, Nov. 6, 2010
Minneapolis / St. Paul, Spring 2011

You have the power to heal
You have the power to stop someone from dying. Be part of the Be The Match® movement to help all patients receive the marrow transplant they need, when they need it. Be part of the Be The One Run! Walk, run, donate or volunteer to give patients a second chance at life.

For more details please visit:
http://www.betheonerun.org

Cornell University 2 Day Marrow Donor Drive

If you don't live in NY but know someone who does please let them know about this drive. Thanks for any help! This is a two day donor drive with two locations to register each day. Look for the Cammy Lee Leukemia Foundation booth.

August 31st - Cornell University

11am – 3pm | Ho Plaza

5pm – 8pm | Robert Purcell Community Center

_________________________________

September 1st - Cornell University

11am – 3pm | Ho Plaza

5pm – 8pm | Robert Purcell Community Center

_________________________________

http://www.cllf.org/index.php/marrow-drives.html

Rest in Peace Barry Pham :(

I just learned on Janet Liang's blog that a very young patient, just 16 months old, has passed away after a transplant failed.

Little Barry Pham was a patient that I was aware of but not completely familiar with. Janet had kept herself up to date on his condition as they both suffered from the same type of leukemia: acute lymphoblastic leukemia classified “bi-phenotypic” in nature.

Janet implores in her blog post that if you live in these areas to please consider attending these drives to register to become a potential donor in the National Marrow Donor Program, or sign up to be a volunteer and help recruit donors a these events:
_______________________________________________________

Midwest:

Carthage, Missouri on August 6th and 7th 2010

1900 Grand Avenue, Carthage, MO 64836

9:00 am to 9:00 pm

For more details about this particular drive and how you can help, please contact Ted Nguyen, the Vietnamese Outreach and Recruitment Coordinator for A3M, at tnguyen@A3Mhope.org

_______________________________________________________

Northern California:

San Jose, Grand Century Mall on August 14, 2010

1111 Story Road, San Jose, CA 95122

11:00 am to 3:00 pm

For more details about this particular drive and how you can help, please contact Annie Doan, the Vietnamese Outreach and Recruitment Coordinator for AADP, at annie@aadp.org

_______________________________________________________

Says Janet:

"It is actually best if you are able to crumple up your sleeves and volunteer an hour or so of your time to recruiting marrow donors to join the registry. All you need to do is contact those coordinators I’ve listed above, and I assure you that they will get back to you as soon as they can. Sitting behind a computer screen and pressing a button to share this is fair enough in the internet community, no doubt, but sometimes it all comes down to face-to-face persuasion to save someone’s life. I can’t think of a better person today that we should to do this in honor of than little Barry.

For more information about his courageous story, please visit his website at: www.savebarry.org"

1 Year and 14 Days - Stem Cell Transplant Update

So here is the big news: After going through extensive testing at the one year anniversary of her stem cell transplant, my cousin Tami's remission continues. (YAY!) The testing she underwent showed she has no Myelodysplastic cells in her bone marrow. During the recheck she also had to get 7 vaccinations. This is because receiving a stem cell transplant is like having the immunity of a baby so the vaccinations help to strengthen her new immune system and protect her.

Now not only is she driving again, Tami was given the all clear to go back to work part time. Her life interrupted is beginning to return to normal.

Tami does continue to suffer from a mild case of Graft vs Host disease. Unfortunately she may be dealing with GVHD for months or years to come. GVHD is when the donor cells don't realize they are in a new body so they are attacking Tami's tissues as if they are foreign bodies invading the donor cells original body. For now her doctors have placed her back on a mild steroid that is keeping the GVHD under control.

She has requested to meet her stem cell donor. The way this works is that her information is now provided to the donor and he can make the decision whether to contact her or not. They said sometimes it can take months for the person to contact so we'll see what happens. If her donor is reading this, and would like to meet Tami but is afraid he will be publicly outed here on the blog: Please let me me assure you we will honor whatever level of privacy you request. If you want to be featured in the blog I would be happy to give you this space to tell your story. If you would prefer to remain anonymous to the world we will make no mention of any details of who you are, where you live or what you do :)

And this is just funny: Last year while spending 4 months in Seattle receiving her transplant and recovering from the procedure, she and her Auntie (who was her caregiver) would go out shopping whenever Tami felt up to it. Looks like they were a good shopping team.

But can you believe they weren't shopping together when they bought theses matching jackets last month? LOL Tami and her Auntie were 275 miles apart when by chance, they both chose the same floral print jacket. LOL

Blood Drive - A Giving Back Event Hosted by Roger Contreras

Blood Drive - A Giving Back Event Hosted by Roger Contreras

Saturday, August 28, 2010
12:00pm - 5:00pm

Gabby's BBQ Restaurant
4659 Telephone Road & 610
Houston, TX

Please contact Roger by phone at (832) 848-6705 or view the "I have MDS" group page on Facebook for more information.

If you can, Roger asks that you please RSVP as soon as soon as possible to make sure they have adequate staff to accomodate all donors.

Roger continues to recover from the stem cell transplant he received last year. Because Roger needed numerous blood transfusions while waiting for his transplant, giving back and helping others in need has become his mission.

If you live in Houston please consider attending. If you live somewhere else but know someone else who lives in Houston, please let them know in case they would like to donate :)

Pantene Beautiful Lengths Hair Donation

Stacie here. I'm Tami's cousin who has been writing this blog on her behalf since her diagnosis in 2009.

Yesterday my awesome hair stylist and good friend Armando Sarabia (of Get Your Do Up) chopped off my hair!

I had decided at the beginning of the month that it was time to donate the hair I'd been growing the past several years and chose to donate to Pantene Beautiful Lengths. I chose Pantene (thanks to my friend Loretta for sending me a New York Times news article about them) because they make free wigs for women who are cancer patients. Needless to say, Tami's experience made the process more meaningful than the last time I did this.

As Armando was CUTTING MY HAIR OFF I couldn't help but notice, peeking between my fingers in the mirror, that he was looking at the camera and not my hair! *Gulp* I pointed out that looking at my hair might be a better course of action but he just laughed and assured me he is a professional and didn't need to look. Well, he was right. He cut my hair beautifully!

This is a close up of my reflection in the mirror from the picture above. All I could think was "EEEEEEEEEEEEEEEEK!"

Mission accomplished! The first time I did this in 2003 I sent Locks of Love 17" of hair. This time I'm sending an 18" ponytail to Pantene Beautiful Lengths.

A quick shampoo and Armando styled my hair cutting it all one length.

Triumphant. Both Armando and my hubby had been bugging me to cut my hair for the past two years. Hubby didn't want me to go quite this short but I figured it's only hair and will grow back.

And to top if off I ordered new business cards that reflect my new hair do!

Only a few people knew I was cutting my hair. Last night my hubby and I were having dinner with a large group of friends and I was meeting him at the restaurant as I attended a business networking event preceding dinner. It was hilarious to walk in with my new look. He was shocked. I thought he would be super happy since he'd wanted me to cut my hair for so long, instead he was super stunned. By the end of the night he was loving the new do, but it took a while for him to decide if he liked it or not.

Taaa Daaa! My friend Kathleen took this photo of the front of me at the networking event with her iPhone.

And here's another pic with my friend Carl Mindling.

If you want to grow your hair out to donate, CLICK HERE to view a past post about how I grew my hair so long in the first place. To be honest you might start to feel a bit like a sheep, growing its wool out to be shorn, but when you send in that ponytail knowing you're helping a person in need, it's so worth it.

Update: Jimmie Johnson Wins the Pepsi Refresh Challenge!

Thanks to everyone who voted for NASCAR's Jimmie Johnson in the Pepsi Refresh Project. Thanks to you his idea to create pediatric transplant grants for children who need stem cell and bone marrow transplants was voted #1. This means the "Be the Match (aka the National Marrow Donor Program) will receive $100,000 from the Pepsi Refresh Project to help children 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

Update on Tami - 11 months post transplant!

Well there are all kinds of things for m to report to you and almost all of them are really good news! YAY!

1) The one year anniversary of Tami's stem cell transplant is next month!

2) If all goes well at her anniversary recheck she is planning to go back to work the week after 4th of July weekend if her doctor's give her the all clear.

3) Unfortunately Tami is experiencing another mild case of Graft vs. Host Disease. Her doctors are treating it by putting her back on an immunosuppressant drug.

4) While at her anniversary recheck she is planning on signing the confidentiality release in the hopes of being able to directly contact and/or meet her donor someday. In order for that to happen her donor will have to have signed a similar release. Only after both parties have signed the release will the National Marrow Donor Program help facilitate direct interaction between them.

I was chatting with my mom the other day and we are hoping that her anonymous donor will sign his release so that our family can thank him personally for being willing to be a donor and helping to save Tami's life. All we know is that at the time of Tami's transplant he was a 33 year old Asian man who lives in the United States.

In other news Tami is driving again and her hair continues to grow back in. In recent weeks she has also felt stronger for the first time in over a year. She has started doing pilates this week in place of physical therapy to help get her strength back. She says her instructor is a physical therapist so she really knows her stuff :)

4 Year Old Devan is Searching for a Marrow Match

I just found out about 4-year old Devan who has high-risk Acute Promyelocytic Leukemia (APL) a rare type of leukemia. Devan needs to receive a bone marrow transplant within 10 weeks. Being 1/4 South Indian and 3/4 Northern European, Devan falls into the category of mixed ethnicities that is more challenging to match because for every patient in need, their best chance of locating a match is within their own ethnic group. If you are of two or more ethnicities it usually means needing to find a donor who shares the same ethnicities.

There is still no match for him in the global adult stem cell/bone marrow database. A provisional, partial cord blood match has been located for Devan but his best chance of a successful transplant is to locate a 10/10 match. A partial match can be successful but the odds are not as good as with a full leukocyte match. If you are of South Indian descent and especially if you are of Indian and Caucasian descent please consider joining the marrow registry in the hopes that you will be Devan's match. You can learn about the two donation methods by CLICKING HERE. Visit Devan's Website by CLICKING HERE

Joining the registry is just a registration form and 4 cotton mouth swabs that you rub on the inside of your cheeks. Devan is just one of thousands of sick patients searching for a marrow match so that they can have a chance at having a future. Of the approximately 6000 Americans searching for a match each day because they are suffering from blood cancers like Leukemia and other blood conditions like Aplastic and Sickle Cell Anemia, 70% will not find a match in time. You can help. You might be a match. You might be able to help save a life.

Please CLICK HERE to locate an in-person marrow drive using your zip code

Please CLICK HERE to order a mail-back test kit that will be sent to your home