Showing posts with label AAMDSIF. Show all posts
Showing posts with label AAMDSIF. Show all posts

Tuesday, April 17, 2007

Ten ways YOU can help.

So often, when friends, families, and acquaintances learn about what we are going through, they want to know how they can help. Every so often, I like to post specific ways people can help. Although I know these posts can get long and tedious for some, I urge you to please read through the list. Everyone is different, and everyone has a different gift. I tried to take that into consideration as I compiled my list. Together, we can make a difference. We really can. And honestly, the best way you can help us is by helping others.

1. Pray. So many of you have been praying for us, and I cannot emphasize enough how much that has meant to us. I firmly believe that each of your prayers, happy vibes, and virtual hugs have kept us strong on days when we should have been weak, helped with the overall smoothness of Joe’s recovery process, and have all around enveloped us with the best of warm fuzzies. I would also challenge you to add one or two other people to your prayer list from our links to the left. Or go to Asians for Miracle Marrow Matches and pray for the patients there. There are too many people who are battling these awful cancers, and each one of them could benefit from the power of prayer.

2. Spread the Word. It is all about spreading awareness. We knew virtually nothing about bone marrow failure, blood cancers, and bone marrow transplants before our journey began. Now that we have been forced to come face to face with the awfulness of MDS, it has challenged us to arm ourselves with information so that we are able to educate others and promote awareness. Go out there and spread the word. Tell people about this list! Getting information directly from a human being can be much more effective than getting information from a flyer.

3. Register to be a Donor. If you are in good health and are between the ages of 18-60, you can register to be a donor. Registration is simple and doesn’t hurt. Just fill in some forms and swab your cheeks. Most people will never be called, but if you are – honey, you’ve won the lottery. What can be more fulfilling than an opportunity to save a life and be an answer to prayer. Click here to get started.

4. Pregnant? Make plans to donate cord blood. If you have already decided to make arrangements for personal storage, that is a personal decision and totally cool. If not, then the umbilical cord and placenta are commonly tossed after birth. Consider making arrangements to donate the blood. It could help save a life! If you will be giving birth in a hospital that is not affiliated with a cord blood bank (for example, Pittsburgh does not have a cord blood bank yet) you may call Cryobanks International, and visit their site for more information. The number is 1-800-869-8608. They accept donations from all over the U.S. You must register between the 28th and 35th week of your pregnancy. You can find more information here.

5. Donate blood and platelets. Patients with cancer often have to have multiple blood and platelet transfusions throughout the course of their battle. Donating blood and/or platelets is a wonderful way of helping to make sure they get the transfusions necessary. Look up your local blood bank or Red Cross for more information.

6. Support a charity.


  • Marrow Trek – Thursday, April 19, 2007 is Joe’s Day 100! Friday, April 20, 2007, Joe’s college roommate Jim and another college friend Jesse will be starting a 3,000 mile hike over 4 months. The purpose of their trip is to raise money for the Dana-Farber Cancer Institute and Cammy Lee Leukemia Foundation (CLLF), and raise awareness and sign up donors for the National Marrow Donor Program (NMDP). Amazingly enough, the pledges have already exceeded their goal of $15,000. However, Jim always hoped that the goal was a conservative amount. You can still donate. And you can be sure that every penny of your hard earned, tax-deductible donation will go straight to Dana-Farber Cancer Institute or CLLF. Visit the site for updates on their progress.

  • Aplastic Anemia & MDS International Foundation, Inc. – AA&MDSIF is a wonderful group that provides support to patients and does research related to treating and curing bone marrow diseases. The bravery bracelets that some of you have are from AAMDS!

  • Leukemia & Lymphoma Society – This is another group that funds education, research, and support. You may recall that our friend Louis ran a marathon to help raise money for the Leukemia & Lymphoma Society.


7. Knit, crochet, or sew. I know that there are many people out there who are crafty. Here are two organizations that are dedicated to turning craftiness into charity. Check out the pages for more information.
Project Linus - providing security through blankets.

Head Huggers - providing hats for those who have lost their hair due to chemotherapy or other medical situations.


8. Shop through iGive.com – For all you shoppers out there, you can shop at many of your favorite online stores through iGive.com. Go shopping, and a percentage of your purchase will go to the charity that you designate. CLLF, AA&MDSIF , and The Leukemia & Lymphoma Foundation are all charities that you can choose from.


9. Use GoodSearch.com to Surf the Web – Love to surf the web? If you use GoodSearch.com as your search engine, money will go to your designated cause. I know that you can choose AA&MDSIF as a charity.

10. Contact your congressperson. This message was in the most recent AA&MDSIF e-bulletin.

Dear Friend, On March 6, 2007, Representatives Jim McGovern (D-MA) and
Mary Bono (R-CA) introduced H.Con.Res. 81, the Bipartisan Bone Marrow Disease
Resolution, to encourage the federal government to fund research and engage in
public health initiatives that give patients greater access to more treatment
options and, ultimately, cures for bone marrow diseases.

The Aplastic Anemia & MDS International Foundation played a key role in drafting, presenting, and securing the introduction of this resolution before Congress.

Now it’s your turn to help!

For this resolution to pass, we need to have a broad level of support from individual Members of Congress. Now is the time to contact your U.S. Representative to urge them to cosponsor H.Con.Res. 81. If you do not know who your Representative is, or need contact information, please access [the U.S. House of Representatives site] and enter your zip code under the heading "Find Your Representative."

For your convenience, we have attached a sample script that you can use when you contact your Member of Congress.

Members of Congress do not cosponsor these types of resolutions unless they hear from their constituents. Spread the word and contact your elected Representative today!


Sincerely,

Sherrie Van Vliet

Acting Executive Director Click here for Script


If you have read this far, THANK YOU. I know for a fact that many of you have been doing your part to help as much as you can. How can we begin to thank you? I want you to know that every time we hear that someone has helped in some way, Joe and I literally jump up and down with joy. It is important that we make every effort to turn something negative into a giant positive for others. We are grateful for each one of you who is helping us with that effort!

You are the light of the world. A city on a hill cannot be hidden. Neither do people light a lamp and put it under a bowl. Instead they put it on its stand, and it gives light to everyone in the house. In the same way, let your light shine before men, that they may see your good deeds and praise your Father in heaven.

~Matthew 5:14

Sunday, February 18, 2007

Random

It seems that everyone wants to be like Joe. Apparently, even Britney has gotten the "I-wanna-be-like-Joe" bug. Either that or she has decided to become an avid supporter of AAMDS. Then again, maybe she is just being Britney. I think that as long as Joe doesn't try to be like Britney and get "something dainty" like a tattoo of "cute little lips on [his] wrist" everything will be okay.

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We had some more visitors yesterday. Ray is a new friend that we met...yesterday! Ed is the guy who helped to revamp the fliers used for the bone marrow drives held in Philadelphia and Pittsburgh. We actually met him for the first time yesterday as well. Jurica was one of our small group leaders back in Philadelphia. She was totally awesome. Ed spoke at PCC-Oakland this morning, and Ray and Jurica tagged along to be supportive. We had a great time chatting with them yesterday and catching up on things as well as learning new things. Good times!

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Actually, this Friday there will be another CLLF sponsored minority based bone marrow drive at CMU. Once again, the Lambdas will be hosting. There will also be another bone marrow drive coming up in the next month or two at Pitt. APAMSA will be working with CLLF.

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Our dear friend Lisa recently brought a relevant article to my attention.

Tuskegee's ghosts: Fear hinders black marrow donation

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Happy Chinese New Year everyone!
Thank you Julia for making Joe some homemade chicken soup. Yum!

Posted by Picasa

Wednesday, December 06, 2006

Round 6!

All is well! Joe started Round 6 of his chemo on Monday. Today, the results of his blood draw showed that his counts are slowly sneaking back up. Very good sign. Speaking of counts and good signs, many know that Joe's dad went through a period of very low platelets. Well, he had his blood drawn on Friday, and everything is normal! Yay for that.

Either next week or the week after Joe will be spending a day at the hospital getting all kinds of fun tests to prep for his transplant. We should find out soon what day the test are scheduled.

We had a nice visit from Joe's med school friend Arun over the weekend. He just returned from 6 months in Iraq. It was so good to see Arun and hear all of his stories.

That's about it for today.

Oh yes, I received this message from Aplastic Anemia & MDS International Foundation yesterday...

"Who hasn't uttered the words, "I wish there was something I could do to help"? Now you can. Start shopping! At http://www.industrymailout.com/Industry/Redirect.aspx?u=39490&q=23712705&lm=5097448&r=37213&qz=c15215e62b0707092f1c81393ff61b46 you can buy the gifts you're planning to give this holiday season - like that DVD box set, cologne, or the wall-mounted flat-panel TV you've had your eye on - and help a great cause!
It's FREE -- no invisible costs or tricky obligations. Shop for everyday items from over 650 stores at the Mall at iGive.com, like Barnes & Noble, Lands' End, Best Buy, and Neiman Marcus. Up to 26% of each purchase is donated to the Aplastic Anemia & MDS International Foundation at no cost to you.
Start shopping today at http://www.industrymailout.com/Industry/Redirect.aspx?u=39490&q=23712705&lm=5097448&r=37213&qz=c15215e62b0707092f1c81393ff61b46 and help save lives this holiday season and every day at the Mall at iGive. "

Something to consider if you are doing online shopping, and you aren't already attached to another charity.

Happy day! Posted by Picasa

Thursday, October 12, 2006

Just one more day.

Joe had his 4th day of Vidaza. Today's injections were not fun at all. They were injected very slowly, and really burned going in, and so Joe was in some extra pain. He still keeps saying that all is well, and he's doing fine. I know Joe was exhausted today though because he kept falling asleep. He took 2 or 3 naps today. Poor guy.

There is a potential donor who went forward with the extra testing to see if he is a match for Joe. We're supposed to find out very soon. We're praying and praying and praying that it's a perfect match. There is only one thing that I'd love more - and that is that Joe would be perfectly fine and not need anymore treatments of any kind. That possibility passed long ago though...so I'll take the next best thing. A perfect match, and a perfect transplant. Maybe tomorrow will be the day. Friday the 13th can be as blessed a day as any other!

Lots and lots of things to be thankful for today!!!!!

Thank you to Dr. Tabor for donating to AAMDS in Joe's name. It means so very much to us. And Joe is really enjoying the books!
Thank you to Van, Rune, and Hannah for the wonderful gift. I know you must be trying to make us fat, but we love you like crazy anyway!
Thank you to Jen, Joe, and Gabe for the sweet card. We have much to catch up on. We'll be praying for you too!
Thank you to Mr. Christopher for planning a trip to see us. Sorry you ended up feeling under the weather. Hope it didn't last long. Surely there will be another opportunity to get together.
Thank you to Cammy for the cute card. We love you too! You better come back to Pittsburgh!

Happy happy 30th birthday to Heather. Wowie! Hope you're having fun.
Happy happy 2nd birthday to Evan! Thanks for singing to me. It was great!

Therefore, my dear friends, as you have always obeyed - not only in my presence, but now much more in my absence - continue to work out your salvation with fear and trembling, for it is God who works in you to will and to act according to his good purpose.
~Philippians 2:12-13

Monday, October 02, 2006

Photos.

Joe sportin' his blue bird in the forest shirt designed by Lisa
and a pink ribbon supporting Susan G. Komen Breast Cancer Foundation.

Lilly sportin' her Bravery Bracelet as part of the AA&MDSIF Awareness Campaign.

Cammy sportin' her Carnegie Mellon shirt from the CMU Lambdas!


Joe, Lilly, and Mrs. Li


Lilly, Mrs. Avery, and Joe Posted by Picasa