I Am Desperate for Your Help

I was stunned this morning to discover that Janet Liang, a 24 year old Leukemia patient I became friends with two years ago, had posted a new video on Youtube saying her doctors have told her she only has two months left to find a bone marrow match or it will be too late.

Janet in remission last year and this week after being told she's running out of time.

How can you help?

1. If you aren't already in the bone marrow registry please JOIN NOW. Registering is pain free and donating almost is.

2. If you are in the registry and are contacted please donate. A shocking percentage of those contacted decline to donate when told they are a patient's best match.

3. I know a lot of times we look away because a problem feels too immense or we feel too helpless to do anything about it but there are lots of things you can do to help Janet:

• Email the link to this video http://youtu.be/qSCyz8F_kuo to everyone you know.
• Blog about her. To learn more about Janet visit her website at: http://www.helpingjanet.com/
• Tweet about or retweet this post
• Join her Facebook Group for her latest updates: http://www.facebook.com/helpingjanet
• Print and post the PDF Flyer and tear away tags to help motivate others to help
• Print, post and share the QR code to this video <img src="http://qrcode.kaywa.com/img.php?s=8&d=http%3A%2F%2Fyoutu.be%2FqSCyz8F_kuo" alt="qrcode"  />

Janet desperately needs her story to go viral. Please help me share it to save her life.

Please watch this Youtube video titled "Finding a Perfect Match for Janet - Her Personal Plea." While she says she hasn't lost hope she tearfully opens with her fear of dying and that she doesn't have much time left. Janet was first diagnosed with Leukemia in 2009, achieved remission in 2010 and relapsed just before Christmas in 2011. I try to imagine how that would feel and it makes me want to help as much as I can, any way that I can, so I am reaching out to you hoping you will help me, help Janet.

Please print Janet's flyer and hang it wherever you can.

Print and post the PDF Flyer and tear away tags to help motivate others to help.

Tami Met Her Donor Scott at a Be The Match Fundraiser

I am thrilled to be able to post a heartwarming update about Tami, who most of you know because of the www.HelpingTami.org website I built for her when she was first diagnosed with a blood cancer similar to Leukemia callled Myelodysplasia in Feb. of 2009.

First I was able to report an anonymous match had been found. Then that her transplant had taken place. Then came the one year anniversary of her transplant. After one year the donor program allows donors and recipients to learn each other's identities if both parties are willing. So Tami met her anonymous donor Scott via the telephone and email in September of 2010 and we were able to see the face of the person we all felt such gratitude towards! Now here we are two years past her transplant date, she is still in remission and she was able to meet Scott in person less than a month ago!

Marrow Donor Scott Kikiloi met his recipient, my cousin, Tami Schwartz at the Hawaii Bone Marrow Donor Registry’s "Thanks for Giving" Hair and Fashion Show Luncheon at the Hawaii Prince Hotel on November 20, 2011.

Tami said:

I was honored to be invited to the 2011 Hawaii Bone Marrow Registry Fashion Show fund raiser in Honolulu to meet my stem cell donor Scott Kikiloi. Little did I know in February 2009 when I was diagnosed with Myelodysplastic Syndrome (MDS) it would lead my family to Honolulu to meet Scott, his wife Punahele, and his parents and extended family.

In June 2009 during my transplant, I wondered who this giving person was. After 14 months of waiting to find out, I received a letter with Scott’s identity. I immediately contacted him and found out he was everything I imagined. I have been fortunate to get to know Scott and his wife Punehele through email, Skype, and Facebook this past year and was very excited to finally meet them in person. When we finally got to meet at the fund raiser, he was everything that I expected him to be. It was a very emotional day for all of us.

Scott had joined the National Marrow Donor Program Registry back in 1996 when he learned about a little girl in Hawaii named Alana Dung who needed a bone marrow transplant.

Not only did we get to meet Scott but meeting Alana Dung's parents, Stephen and Adelia Dung was very hard. To think that their family lost their little girl but that her memory has continued to help over 100 people from the various donor drives that were held for her."
When Alana Dung was diagnosed with Acute Myeloid Leukemia in 1994 there were 16,500 Hawaii residents who had registered to donate their marrow to patients in need.  As word spread about Alana's diagnosis the state reached out to help her. Over 30,000 people joined the National Marrow Donor Program Registry in Hawaii to try to help Alana.

I've been told that once Alana's need became public you couldn't walk down the street without seeing a marrow donor drive taking place at schools, businesses, malls, special events and at churches. . . Everyone wanted to help. Sadly, after receiving a transplant in the summer of 1996 Alana passed away a few months later after suffering a relapse.

Along with the Alana Dung Research Foundation her parents created, part of Alana's legacy is that over 100 patients have been given a second chance at life by finding a donor from amongst those who registered to help her. Someday that number will certainly be in the hundreds or even thousands as each new day brings new diagnoses and new patients all around the world who will continue to benefit from those who joined the registry to help this precious little girl.

"The timing of this event during the Thanksgiving season made me think more and more how thankful I am for Scott’s gift and hopefully our message can reach more people to sign up for the National Bone Marrow Registry to help give the gift of life to others as Scott did through the Alana Dung registry in 1998. I cannot thank Scott enough. Spending time with Scott and his family showed me what great, giving people they are. Scott and I talked about anything we can do to get our story communicated to others to encourage them to sign up for the Bone Marrow Registry will hopefully help others in the future. I know just from the stem cell drives that were held when I was diagnosed have at least three people to date who have been donors and another two that have been called to be possible donors.

Mahalo to Scott!

Next are excerpts from Scott's point of view from The Gift Of Life Through Marrow on Midweek.com by Yu Shing Ting:

"Kikiloi, 36, says he has no regrets on becoming a donor, but admits it was not an easy choice at first. He just needed a better understanding of the process. He also had a lot going on at the time with a “pretty demanding” job at Kamehameha Schools as cultural assets manager, and working on his Ph.D in archaeology at the University of Hawaii.

Scott donating his stem cells by PBSC to help Tami.

There also was a trip he was planning to the Northwestern Hawaiian Islands for his dissertation on two of the islands there, which was not easy to coordinate. “I would be on these islands in the middle of the ocean for about a month to survey the site and get samples,” explains Kikiloi, who grew up in Kaneohe and lives in Manoa. “It’s really rugged, difficult islands to live on (about 300 miles away), so I needed to be in good health. If there was an accident or if you needed medical attention your life could be at risk."

Scott, his wife, parents, sister and brother in-law.

“But for me, I tend to help people. I thought about it, and if I was the only match, I’m not going to leave someone hanging like that. It just came down to that it was something I felt I should do, and I ended up doing the donation a few weeks before the trip.”

“I’d like to encourage people to join the registry,” says Kikiloi. “(For me) it was definitely worthwhile. Being able to save someone’s life is an honor and a privilege.”

Adelia Dung spoke as Tami watched from the stage.

The top image above is Tami and Scott with their families attending the Luncheon.

The lower image is of her family with Roy and Annie Yonoshiro. Roy works at the Hawaii office of "Be The Match" the National Marrow Donor Program and Annie is a volunteer there.

I've actually spoken to both Roy and Annie by phone when Tami was first diagnosed and I was doing as much research as I could to learn how to help her. It's really neat to now have "faces" to piece together with my memories of speaking to them by phone. Annie and Roy helped to coordinate Tami's attendance at the fashion show and are dedicated advocates to helping more people like Tami find the life saving matches they need by growing the Hawaii bone marrow registry with more potential donors.

A poster for the event itself.

Scott, Tami and Paul

And a special thanks to Tami's cousin Paul Mow for allowing the use of his photos in this blog post.

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While Tami's happy ending continues to unfold there are still approximately 6000 American patients searching for a match every day and thousands more world wide. Just like Scott you can help one of them if you are a match.



Joining the registry is virtually pain free and donating usually almost is. WIth the new PBSC method of stem cell donation it isn't nearly as painful as most people seem to think it is. Discomfort, if there is any at all in most cases is mild and short lived. You can learn more about the two donation methods by CLICKING HERE.

IN THE UNITED STATES

If you live in the United States please go to the Be the Match website and enter your zip code to locate a live drive in your area.

Or CLICK HERE to order a test kit that will be mailed directly to you.

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ALL OTHER COUNTRIES

There is also a list of international marrow donor programs at this link on my Marrow Drives website.

Please contact a program near you to locate a live drive or registration location. In most countries testing is simply swiping the inside of your cheeks with 4 cotton swabs while in some a simple finger prick for a blood sample is all that is needed.

Alice's Bucket List and How You Can Help Her

Alice is a 15 year old British girl who in three short days has become internationally famous because of her Alice's Bucket List blog. Why would a 15 year old girl need a bucket list of things she wants to do before she dies? Because she has terminal cancer. Alice is suffering from Hodgkin's Lymphoma, a cancer of the lymphatic system, and may have only weeks left to live as much of her life as possible.

Yesterday and this morning Alice was trending on Twitter because someone tweeted to trend on Twitter was one of her bucket list wishes. But as the International Business TImes and Guardian.co.uk pointed out this morning, something got lost in translation. To "trend" on Twitter (meaning be one of the most popular topics being talked about and shared on Twitter) just for the sake of trending wasn't really her goal.

In actuality her wish was to broadcast an appeal for people to register and join their national bone marrow donor registries. Reaching people "To make everyone sign up to be a bone marrow donor" is at the top of her budket list. She even donated herself, to herself, two years ago and says "it really didn't hurt at all."

Says Alice in her blog post on June 9th, 2011:

"I'm excited about the things I am going to be doing, but the biggest thing has to be all the people who are joining bone marrow donation schemes because of me. I read on someones post that it is really painful. Well, mostly bone marrow is taken as cells via a needle and I have had it done. I was 13 when I had my first transplant and because they used my own cells, I had to have them taken out (they call it harvested) and then stored and put back in some months later after more chemo. I'm not just saying this, but it really didn't hurt at all. I had a tiny bruise from the needles and that was about it. I was a bit tired too but I'm always tired so that may not have been the cells.

So, I was never begging and I don't need any money but I do love to get your messages and I hope you'll follow my blog and keep leaving me a message. I will take a camera with me wherever I go and I'll post photos of everything I do. In return, you can keep asking everyone you bump into to join the bone marrow donation schemes in your country."

To join the marrow registry:

• In the UK Alice recommends the Anthony Nolan UK Blood Cancer Charity.
• In the US you can visit Be The Match to order a home test kit online or learn where local drives are being held using your zip code.
• Internationally you can see if your country has a registry by visiting a site I created called Marrow Drives.org

And just an FYI: Many of the national registries combine to form the international donor pool where over half of all matches world wide are found. How does it work? Donors donate where they live and the marrow or adult stem cells are flown to the patient's treatment hospital for the transplant. (My cousin Tami in Washington state received her stem cells from her anonymous donor in Hawaii.)

Please honor Alice's wish by joining your local registry and encouraging others to join if you can't or are already in the registry.

If you want to donate money to a cause the only option Alice has mentioned is to support her sister Milly in the Race for Life run sponsored by Tesco and Cancer Research UK.

Alice I am so sorry that you are sick and I hope you are able to make most of your dreams come true. Have fun this weekend at Take That! And thank you for helping to raise awareness about the marrow donor registry. I'll be reading your blog from now on and will help as much as possible to publicize your list.

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Here are some of the things Alice wants to do with the time she has left:

• To make everyone sign up to be a bone marrow donor
• To swim with sharks
• To go to Kenya (I can't travel there now but I wanted to))
• To enter Mabel in a regional Labrador show
• To have a photoshoot with Milly, Clarissa, Sammie and Megs
• To have a private cinema party for me and my BFFs
• To design an Emma Bridgewater Mug to sell for charity
• To stay in a caravan
• To have a purple Apple ipad but I'm not really allowed to put that on here and mum is trying to borrow one
• To be a dolphin trainer (I can't do this one either now)
• To meet Take That
• To go to Cadbury World and eat loads of chocolate
• To have a nice picture taken with Mabel
• To stay in the chocolate room at Alton Towers
• To have my hair done if they can do anything with it
• To have a back massage
• To go whale watching

Houston, TX this Saturday: Roger's Second Annual Blood Drive and Fundraiser

It's that time of year again, the second annual Roger Contreras Blood Drive and Fundraiser. Roger had the same blood cancer (MDS) that my cousin Tami had.

That's Roger and his sister who donated her stem cells to help cure his blood cancer.

Saturday, March 26, 2011
10:00 am - 6:00 pm
Gabby's BBQ Restaurant
4659 Telephone Road & 610
Houston, TX 4659

Gulf Coast Regiional will be there to receive blood donations. Donors will receive their choice of a T-shirt. Please note: The blood bus will not be open from 1:00 - 2:30, so that they can process the first 4 hours of donations.

Some of Roger's Current Medications

This is a also a fundraiser to help cover some of Roger's ongoing medical expenses, particularly his prescription medications that are helping to keep him alive. So, at the same location, BBQ plates will be catered and served by Gabby's. The donation is $6.00 pre-paid and $8.00 day of event. It will include a BBQ Sandwich, side order & drink (w/refills)

Pastries will also be offered for a small donation.

This is True Grit. Roger was up with a walker less than 24 hours after his second hip replacement on March 1, 2011.

Please come out and enjoy the day and say hello to Roger who just recently underwent his second hip replacement surgery necessitated due to complications from the stem cell transplant he received two years ago. His Graft vs. Host Disease required a lot of steroids to control which subsequently damaged his bone marrow causing the marrow in his hips to die. It was a painful condition and the only treatment was to remove his hips and replace them with artificial hips. As if he hasn't been through enough.

Joe Lee Sanchez wiII playing what you like to hear from noon until 3:30 on the outside deck.

If you have any questions or would simply like to make a donation, please contact Roger at (832) 496-1453

Donations can be made via Paypal to txplumber@gmail.com or call him for a mailing address.  (Roger has been unable to work for 3 years now and with mounting medical bills you can imagine how much stress the lack of funds is putting on him and further complicating his recovery.)

If you live in Houston please come out! If you don't live in Houston please share this info with others who do. Thanks for any help and support!

Buy Uggs Online and $20 will Help Marrow Transplant Patients

Thinking you'd like to buy some UGGS but need a little motivation to make the purchase?

If you order them now through www.ComfortShoeShop.com and enter "Gift of Life" in the message box (for a limited time) for each pair purchased, $20 will be donated to Gift of Life.

You may recall Gift of Life is a Marrow Donor Program Registry that recruits potential donors who are ultimately included in the Be The Match National Marrow Donor Registry.

View all styles of Womens' Uggs on the Comfort Shoe Shop by CLICKING HERE

Black History Month and the Need for Black Marrow Donors

Please don't think because you're not Black, this post doesn't apply to you. It does. It applies to all of us.

In honor of Black History Month, $75,000 is what Nordstrom is willing to sponsor when you register to be a Marrow or Stem Cell Donor by using this particular link to the Be The Match Website from February 1st – 28th, 2011. The cost to process each registrant is about $100 and Nordstrom has partnered with Be The Match to sponsor up to $75,000 of testing for one month. This is in an effort to increase the number of potential African American and Black donors to "Be The Match" aka the National Marrow Donor Program.

Why Register to be a Bone Marrow or Stem Cell Donor?
Because there are so many people suffering from potentially fatal blood diseases like Leukemia, MDS (like my cousin Tami) and Sickle Cell Anemia. For many, a bone marrow or adult stem cell transplant is their only chance at surviving their illness.

Because matches are made through chromosomes called leukocytes, not blood, matches are usually found when the patient and donor belong to the same ethnic group.

Sounds simple enough until you learn that only 7% of Be The Match Registry's 9 million members are of African American/Black descent. This means most Black patients have a very slim chance of finding a match in the registry yet they suffer from Sickle Cell Anemia at a higher rate than other ethnic groups.

Marrow Donor Erma Hightower and Stem Cell Donor Patrick Abdul

One thing that upsets me is when people are quick to dismiss the lack of ethnic diversity in the donor registry as "not their problem." It's a short sighted way to look at a very complex issue. For starters, no ethnic group, not even Caucasians, who find a match 80% of the time, find a match every time. That means 20% of Caucasian patients will not survive because a match wasn't found. If you're an ethnic minority or you're of mixed ethnicities your odds of finding a match are far less. Your odds are 30% or less a match will be located.

So even if you're thinking you're not Black so you can't help, you would be wrong. The odds that you'll know someone (family member, friend or colleague) who is stricken with a disease like Leukemia or a life threatening form of Anemia at least once or several times in your lifetime, are higher than you probably realize so encouraging others to join the registry today could save someone you care about later.

Add to that that occasionally, matches are found between people of different ethnic groups and that will hopefully be reason enough to at least consider becoming a potential donor and/or helping to recruit others to join the registry.

Photos from the Nordstrom Website

I've been in the registry since 1995 and have never been a match for anyone yet. I hope I am someday. I would donate in a heartbeat. From all accounts I've read online side effects from donating marrow (from the hip bone) or PBSC (stem cells donated through aspheresis like plasma) range from none at all to mild stiffness or nausea. Little to no discomfort to possibly save a life? Yup, I'd do that.

CLICK HERE to learn about the almost painless PBSC (Peripheral Blood Stem Cell)  donation method about marrow donation from the back of the hip (pelvic) bone.

CLICK HERE to Register to be a Marrow or Stem Cell Donor through Nordstrom's generous program to grow the Marrow Donor Registry. You could save a life.

A Happy New Video Featuring Marrow Donor Recipient "T-Rex"

Want to join the fight? Be The Match bone marrow donors save lives. Learn more on Be The Match's YouTube Channel: www.youtube.com/bethematch

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.