Celebrate Black History Month with Nordstrom

Two of my favorite top quality organizations are teaming together to help meet a critical unmet need in the black community.

Here is the story:

Nordstrom, Inc. is recognizing Black History Month in 2011 by teaming up with Be The Match^® to help raise awareness of the critical need for more African American marrow and umbilical cord blood donors.

According to Be The Match, more than 10,000 U.S. patients are diagnosed with diseases like sickle cell anemia and leukemia every year, and their best or only hope of a cure is a bone marrow or cord blood transplant. These patients do not have a donor match in their family, and rely on the Be The Match Registry^® to find a match. Patients are more likely to match a donor from their own race or ethnicity, but just seven percent of the Be The Match Registry’s 9 million members are African American.

For more information about the Nordstrom Living Well campaign and Be The Match visit http://bit.ly/hZszoZ

Charity is an obligation

My religion teaches that charity is an obligation, a spiritual act.

I was a minor facilitator in a couple of wonderful charity stories.

Thanks to all you who used my blog and many other sites like it to vote for BE THE MATCH, I am happy to announce:

Jimmie Johnson wins $100,000 Pepsi Refresh grant to benefit Be The Match!

Thanks to you, we won! You votes counted! Jimmie Johnson won the $100,000 Pepsi Refresh grant to fund Be The Match Transplant Grants for Kids! Thanks to all who took time to vote and spread the word. This win for Jimmie is also a win for the kids!

The other story touches closer to home. I just discovered that a fundraiser in Leeds, England lead by Rabbi Daniel Levy and supported by the generosity of his congregants, set up the fund three years ago that found my donor.

The good rabbi and his United Hebrew congregants have done it again. I wrote a short appeal based on my transplant story for last month's fundraiser, not knowing at the time how these folks in Leeds helped give me this second chance at life.

Below is the news coverage. In the next post I will include what I wrote.

REGISTRY GIVEN £50,000 BOOST FROM DINNER

THE Ezer Mizion Bone Marrow Registry has benefited to the tune of £50,000 from a United Hebrew Congregation community initiative.

A gala dinner held at the Queens Hotel, Leeds, attracted some 200 guests.

And two Ezer Mizion donor pools were established in the names of two Leeds women whose lives were devoted to helping others - Audrey Manning and Susan Black.

Rabbi Daniel Levy, chairman of the Ezer Mizion dinner committee, said Audrey and Susan were two outstanding Leeds women who appreciated people and had a great sense of community.

Their deep feeling of responsibility led them to dedicate themselves to others.

He said: "Audrey raised funds for the Ladies Aid Society which eventually amalgamated with the Leeds Jewish Welfare Board. She was a keen member of WIZO and a most active volunteer at Donisthorpe Hall.

"Susan raised funds for orphaned children under the care of Norwood and she was also a committed member of the Chevrah Kaddisha; she was renowned for her warm empathy and comforting of the bereaved."

Three years ago, the United Hebrew Congregation hosted the acclaimed Sacred Voices concert. The event established four donor pools for Ezer Mizion and raised in excess of £30,000.

"Through one of these pools, the Leeds Jewry Donor Pool, Yaakov Fabian, a 22-year-old yeshivah student in Israel, donated his stem cells to an unknown recipient," added Rabbi Levy.

"The next day Dr Brian Koffman in California received them and in November 2009 they had an emotional meeting in New York.

"I am sure that the Black and Manning families will derive some comfort in the fact that other lives will be saved in their loved ones' memories from the establishment of the Audrey Manning Donor Pool and the Susan Black Donor Pool."

The Ezer Mizion Bone Marrow Donor Registry, established in Israel in 1998, is the largest Jewish registry in the world. Because donors and recipients need to be genetically compatible, Jewish patients generally require Jewish stem cell donors.

Rabbi Levy said: "Tonight we hope that those who need a bone marrow registry are able to find an appropriate match. That is why we are here tonight, to celebrate life and to provide hope for the future."

He paid tribute to those who supported the dinner and had a word of praise for the organising committee, Susan Belford, Sarah Doerfler, Ian Freeman, Pam Glynn, Michael Goldstone, Adele Manning and Anne Pliener.

Rabbi Levy later told the Jewish Telegraph: "It was an inspirational evening, full of joy for the lives that have been saved, but also tinged with sadness for those who have sadly passed away.

"The response has been fantastic and I am most grateful to the Leeds community for their overwhelming generosity. We are full of admiration of Ezer Mizion's awesome work."

Other speakers were donor and IDF solider Shmuel Horowtiz and London Ezer Mizion director Simon Maurer.

Entertainment was provided by Canadian-born Israeli Chassidic rock and soul musician Menachem Herman.

Thanks to all you and thank to those good people in England.

California to Leeds to Jerusalem. We never know where our salvation lies.

It is a mitzvah, a commandment to give back.

Vote Often for Transplant Patients

Pepsi and BE THE MATCH, what a combo. My dad's work with PEPSI put me through medical school, and BE THE MATCH saves lives of people like me.

Now if only it was the NHL and not NASCAR it would be a match made in heaven.

Take a look. $100,000 at stake and all you need to do it vote.

E-news article

TRANSPLANT PATIENTS NEED YOUR VOTE!

Help NASCAR champion Jimmie Johnson and Be The Match Foundation^SM
take the lead in a race for $100,000

Pepsi, Jimmie Johnson and Be The Match Foundation^SM are teaming up in a race to win $100,000.

There’s never been an easier way to help children battling leukemia and lymphoma receive the marrow transplant they need.

Go to NASCAR.COM/PepsiRefresh and vote for NASCAR champion Jimmie Johnson and Be The Match Foundation’s Transplant Grants for Kids. Voting is open through June 23^rd and you can vote as many times each day as you would like.

Pepsi has invited three NASCAR drivers to take part in this friendly competition. All are teammates on the Hendrick Motorsports team and each driver will promote a charity of his choice. The driver who collects the most online votes by June 23^rd wins $100,000 for his charity.

Jimmie Johnson, the four time reigning NASCAR Sprint Cup champion, has selected Be The Match Foundation as his charity. The funds would help financially vulnerable families afford the uninsured and overwhelming recovery costs that come with a child’s marrow transplant.

“I can't imagine having to choose between being beside my child's hospital bed or being at work in order to keep our insurance active and a roof over our heads. It is a wonderful thing to know that Transplant Grants for Kids can help ease that tension,” Johnson said. “These grants give moms and dads a little less to worry about and give kids what they want most when they are sick - their parents by their bedside."

This $100,000 competition featuring NASCAR drivers is part of the Pepsi Refresh Project, a multi-million dollar national campaign that asks people to submit ideas to better their community and gives the public the chance to vote for their favorite.

Every year, 10,000 patients with leukemia, lymphoma, and 70 other life-threatening diseases discover they need a marrow transplant but have no donor match in their family. Many are children. They rely on Be The Match Foundation to help them find an unrelated marrow donor and receive the transplant they need.

While a marrow transplant can be a life-saving treatment, it takes a financial toll on a family. Often there is the temporary loss of at least one parent’s income to care for their child. And even with insurance, not all costs are covered. On average, child transplant recovery expenses exceed a family’s income by $1,200 per month.

Your support of Be The Match Foundation helps families pay for prescription co-pays, transportation to and from the transplant hospital (often in another state), temporary lodging, and other uninsured expenses for up to six months after transplant.

Almost two weeks since my last post

It has been almost two weeks since I last had a word to say about my status.

Those who follow me on FaceBook know I have squeezed out a short comment or two, most of which have nothing to do with CLL. I don't tweet too often though.

I could tell you how busy I have been, I could share all the other writing and editing I have been doing, I could detail my painful deconstruction of all my CLL files in what in the end was a vain attempt to impose some order on the paperwork from hell, and I could kvetch about how tired I have been.

None of that would get at the real reason for my missing in action status.

Truth is I was not just up to writing. Bloggers block.

Here's the headlines to catch you up on my latest lab and adventures.

My platelets last week were 131,000. The B2M, a tumor marker is creeping up at glacier pace, and the rest of the lab is pretty much normal. Not bad, but not the usual happy bounce to normal by that time. Hard to know how to react, what to write. It is certainly more than OK, but I was expecting and hoping for better. Next IVig and with it a stat CBC is in 2 days. I will also have a flow cytometry to search for traces of cancer in my peripheral blood. These tests could predict my future, but honestly nothing is predictably predictable.

My four day attendance at a functional medicine conference on cancer in Carlsbad that reopened my eyes to some forgotten possibilities, the speech I gave at a very successful and very emotionally demanding fund raiser for the good people of Be The Match, and Purdue professor, Dr. Kim's reference to my blog in regards to social networking for those with medical needs at a conference in faraway Italy, all deserve significant comment and reflection. Not to mention the tragic loss of the Montreal Canadiens to Philly in the Stanley Cup playoffs.

I will get there. I will do that. But not tonight. This is enough for tonight.

Thinking Transplant?

The great folks at Be the Match have a pretty new resource.

It is a bit hard to find on their web page, so you can click here to find yourself where you need to be to see if you have potential donors lurking out there

It won't do you much good if you arrive without knowing your HLA typing, and honestly you need to know a little about the whole matching process, but the site has a fine FAQ and holds your hand in understanding what the results do and don't mean.

If your number of potential matches is low or zero, don't panic - there are people being added to the registry every day, and there are other registries. Remember my blessed donor was found through Ezer Mizion halfway across the world.

Most of you, G-d willing will never need this service, but nearly all of you can be on the other side - can have a chance to save a life, to be a donor.

Please get swabbed. Please give if you can.

A man I never met, Alan Cohen died because no donor was found. His sister spoke emotionally about his need and his plight at the same event where I met my donor in Manhattan. The video on the site is from that same emotional night.

Despite bringing in 35,000 more donors, no match was found, and he died before the end of the year. Leukemia can be a cruel master.

I am the lucky one from that night. I am still here, still going. I must make a difference.

John Donne got it right:

Each man's death diminishes me, / For I am involved in mankind

So did Ben Lee:

We are are in this together.

Thanks. Help if you can. You will glad you did.

Giving Back through clinical trials

As we all know, sometimes the ongoing day to day struggles with an "incurable" cancer can be overwhelming and depressing.

In response I am trying to get out of myself with the volunteer work for BE THE MATCH and Ezer Mizion .

Now I am volunteering to help with research. Will I get anything out of it? I sure hope so, but my best positive results may be just knowing that I helped further understanding of how we react when we are hit with the unexpected.. The research is not about curing, but coping.

It must be enough for now to share that I am putting my name out there as a lab rat or a data point. When I know more about the process, I will share details if that doesn't breach protocol.