Be The Match

Jason Lee - A Chance to Grow Up

Jason was 6-years-old when he received his bone marrow transplant. That was in 1987, the year the National Marrow Donor Program began matching patients with unrelated donors from a registry of 10,000 members.

One of those members, Lori Groen, was there to give Jason the chance to grow up. Because of her marrow donation, he's alive to tell his story today.

BIG Results from Extreme Makeover: Home Edition

The November 15 episode of ABC’s Extreme Makeover: Home Edition featured patient Joey Stott and her marrow donor Tom Wilhelm, who both spoke eloquently about the need for marrow donors.

 

During and after the episode, viewers were moved to act. In the first two weeks after the show aired:

-         More than 9,500 new members joined the Be The Match Registry.

-         Nearly $69,000 was contributed to support the cause: patient assistance, medical research and adding donors to the registry.

 

Many posted words of encouragement on the Be The Match blog, some memorable ones include:

“Tom, I'm glad to know that there's people in the world like you, what an unselfish act. I too am a registered donor and was inspired by Joey Stott's story. I have known her family for many years. I remember when I heard the news and was not yet registered. I wanted to help. It wound up not to be Joey but hopefully I will be called upon as someone else's match. She fully deserves the Extreme Makeover Home Edition. GO JOEY! and THANK YOU TOM!”

 

“Great job Tom, you are truly a HERO. And there are not enough around these days. I joined two years ago when I started work at the post office. They came and gave a presentation and I signed up right away. Everyone counts, please make a difference.”

 

Read more comments below from previous Extreme Makeover: Home Edition posts.

 

If you missed the show, you can still watch online at http:// bit.ly/6dUa22

Medicare Seeks Input on Expanded National Coverage for Myelodysplastic Syndromes

The Medicare program is seeking public input on the national coverage of bone marrow and umbilical cord blood transplantation to treat myelodysplastic syndromes (MDS) for Medicare patients. Be The Match, operated by the NMDP, is encouraging patients, families and physicians to show their support by submitting personal stories and comments to CMS no later than Dec. 10, 2009 at http://bit.ly/3rPS4V.

Find out more by visiting our Web site at http://bit.ly/1PyurB.

Be The Match Foundation kicks off patient assistance campaign

As of Tuesday, more than 5,700 new marrow donors joined Be The Match Registry as a result of the Joey Stott story featured on ABC's “Extreme Makeover: Home Edition” this week. Before Joey’s cancer diagnosis and subsequent marrow transplant, the Stott family had purchased a farm and made efforts to 'go green,' opening a local farmer’s market. A fire made their old farmhouse unlivable. This devastation happened on top of financial hardships that the Stott’s endured from uncovered transplant-related expenses.

In an effort to raise $1 million to give bone marrow transplant patients like Joey one less thing to worry about, Be The Match Foundation collaborated with “Extreme Makeover: Home Edition.” A campaign for patient assistance funds was created and officially kicked off during Sunday's episode.

For more information about the patient assistance funds visit http://bit.ly/c5Blf  

To view Sunday's episode of Extreme Makeover: Home Edition go to http://bit.ly/3U5WAQ  

To join the Be The Match Registry go to www.marrow.org/join  

Remember to watch this Sunday, Nov. 15

Watch Extreme Makeover: Home Edition Sunday, 8/7c on ABC, for the moving story of Joey Stott, transplant recipient, as she and her family receive a new home. Her marrow donor, Tom Wilhelm, is a special guest.

Tell your friends. It's going to be worth watching!

• Check out the preview at ABC >
• Read Joey's transplant story >
• Read Tom's story, posted here earlier >

Watch "Extreme Makeover: Home Edition" Nov. 15 for an amazing patient story

Tune in Sunday, November 15, to celebrate with bone marrow transplant recipient Joey Stott as she receives a new home, thanks to ABC's Extreme Makeover: Home Edition.

Joey, a 34-year-old wife and mother of three from Lena, Ill., received a life-saving bone marrow transplant in 2004. This Sunday, see her family receive a visit from Ty and the design team, along with a special guest: Tom Wilhelm, Joey's marrow donor (read Tom's story on this blog, below).

Joey's story also helps shed light on the financial hardships transplant patients and their families face. Even though Joey had health insurance when she was treated for leukemia four years ago, she is still paying off $40,000 in uninsured medical bills.

"I didn't think about the medical bills while in the hospital and my husband didn't either, but there was a lot to think about when I got home," Joey said.

In collaboration with Extreme Makeover: Home Edition, Be The Match Foundation^SM is kicking off a campaign to raise $1 million in patient assistance funds -- so more patients and their families can focus on healing.

For more on this episode of Extreme Makeover: Home Edition and to make a tax-deductible contribution to the patient assistance fund, visit BeTheMatch.org/extreme.

Tom’s Story: From Marrow Donation to "Extreme Makeover: Home Edition"

I joined the Be The Match Registry^SM in 2000. I’d heard about a local Colorado girl who needed a marrow donor. Unfortunately, she didn’t make it, but her story stuck with me. I researched where I could join the registry, then drove to Pueblo where I joined through Bonfils Blood Center, a recruitment center for Be The Match.

Getting the call
Two years later, I was called as a possible match for a woman, but she developed complications and couldn’t go through transplant. It was an absolute disappointment for me to realize I almost had the chance to help somebody out, but then I couldn’t.

In 2004, I received another call. This time the patient was a 29-year-old wife and mother from Illinois. I went in for further testing and I asked a lot of questions. I knew I was going to go through with the marrow donation –- it would be foolish and selfish not to. But I asked a lot of questions. I wanted to understand the science.

The donation experience
People ask me a lot of questions about how bad bone marrow donation hurt. But you are under anesthesia during the procedure. It hurts some when you are awake, but let me put it this way: I had the procedure on Thursday and was back at work on Monday.

On the day of the donation, I wasn’t worried about pain or discomfort. My one fear was that the doctors would say “You can go home; we won’t be going through with the marrow donation.” I just wanted to give the patient an opportunity to live.

And donating really wasn’t a big deal, in that the effort it took on my part was minimal. Yes, you can say I saved a life, but my part was just a little cog in a machine built by scientists and doctors.

Making contact with Joey
After the one-year waiting period, I learned my recipient’s name: Joey Stott. We talked on the phone and sent a few e-mails. Prior to contact with Joey, the whole experience was very rational. There was a logical progression in every step. When I got to talk to Joey, it all became very emotional.

All I hope for Joey is to have a great life. To have the opportunity to continue to be a wife, a mother, a daughter -– to have more time with her family.

So when I found out ABC’s Extreme Makeover: Home Edition was building Joey and her family a new home, I was happy to help with the project. I hope that when the episode airs November 15, more people will know about Be The Match and how easy it is to save a life and keep a family together.

• Read more on Tom’s blog >
• Read about Be The Match joining with Extreme Makeover: Home Edition >
• Watch Extreme Makeover: Home Edition Sunday, November 15, 8/7c on ABC

Wilbur's marrow donation experience

Wilbur donated bone marrow through the National Marrow Donor Program, which operates the Be The Match Registry^SM. This is his story.

The opportunity to pay back
My wife works for the post office, and this was how we became involved. (Editor's note: The United States Postal Service's long partnership with Be The Match has added more than 47,000 donors to the marrow registry.)

But the reason for my donation goes back to before I was born. It hit me like a brick wall when I got the call to possibly be a bone marrow donor:

I've finally found a way to repay the person who not only gave me life, but also saved my life very early on.

My mother's choice
While pregnant with me, my mother was told she had developed a form of cancer. The doctor told her she could treat the cancer but the baby wouldn't live through the treatment, or she could bring the baby to full term but she would die because the cancer would be too far along. Without pause, my mother decided the baby would live.

As it turned out, the doctor was wrong and my mother didn't have cancer. Had she decided to have the treatment, I wouldn't have been born. Service to others, putting them first before her own needs -- that's how my mother, Mary E. Baughn, lived her life. (After 74 years and two bouts with cancer, Mary passed from this life to her heavenly reward.)

My choice
Second thoughts about doing this? Never entered my mind!

I hate needles and my family knew this. They all wondered how I would go through the "pincushion" phase.

Well, it wasn't that bad. I really never had a lot of pain, even after the marrow collection procedure.

Everyone I talked to at the National Marrow Donor Program, especially my contact person Cindy Hofkes, made me feel like I was the only person they were dealing with. The donation procedure at Miami Valley was a breeze, thanks to all the wonderful people there.

Only a few people get a chance to possibly save a life. Sign up! Be a match!

Luz’s Bone Marrow Donation Experience

Luz donated bone marrow through the Be The Match Registry^SM. (Luz is shown with her husband, Santiago, and daughters, Gloria and Grace, who all supported her through the donation process.)

Luz's donation story:
I decided to join the registry when our church was looking for a match for one of our pastors. I joined in the summer and by October of the same year I received a letter stating that I was a possible match for a patient.

Of course, there was no question in my mind about donating. I have two daughters and the girl that would be receiving my bone marrow was only seventeen.

"Seventeen, wow!" I thought. "She should be thinking about prom and graduation, not about whether she would find a donor." 

I went back for more tests and it was determined that I was a match. I donated marrow.

My experience was hassle- and pain-free. Veronica -– my donor center representative -- was very professional and compassionate. I did some research on the internet and found that it was supposed to be painful, but I did not experience any pain or discomfort. 

I donated on Wednesday and by Saturday I was back at work. I knew I was in God's hands. By being exposed to the idea of donating marrow, my older daughter found that she could be a volunteer courier, and she joined the program. It's her way of contributing. 

Donating was an amazing experience and a little surreal. Imagine, being a match for somebody who is a total stranger. Wow!! Isn’t God amazing.

I hope that by realizing that this was a pain- and discomfort-free experience, others will be inspired to donate. I am thankful for the experience.

Support Be The Match with Extreme Makeover: Home Edition in Twin Cities

Volunteers in the Twin Cities will have many ways to help others this Friday and Saturday (Oct. 8-9). You can join the Be The Match Registry, donate blood, donate food and volunteer on an Extreme Makeover: Home Edition project!

Be The Match^® is joining ABC’s Extreme Makeover: Home Edition in St. Paul, Minn., as they rebuild the home of Sandy Morris and her children. As part of its ongoing involvement in Extreme Makeover: Home Edition, Be The Match will hold donor registry drives to encourage local volunteers and spectators to join the Be The Match Registry^SM.

In addition, the Red Cross will be holding blood drives and the Neighborhood House is conducting a food drive.

Where and When
Neighborhood House at Wellstone Center
179 Robie Street East
St. Paul, MN  

• Thursday, Oct. 8, 11 am to 5 pm 
• Friday, Oct. 9, 11 am to 5 pm

Joining the Be The Match Registry
There is no cost to join the registry. Potential donors must be between 18 and 60 and in good health. If you can't make it to the event, you can also join the Be The Match Registry online at http://join.marrow.org/morrisfamily

Donating blood
If you want to donate blood at the event, you can schedule your blood donation through the Red Cross online, using the sponsor code 7229.

Donating food
Spectators are encouraged to bring a non-perishable food item to Neighborhood House. http://neighb.org           

Volunteering to work on the house
To volunteer to work on the house visit the builders web site:

http://www.extrememakeovertjbhomes.com/712-volunteer.html

If you want to see the house, shuttles are operating from 8 am - 8 pm through Friday at the Signal Hills K-Mart Parking lot on Robert Street. This is also one of the food drop off locations.