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If you are the parent of a young transplant recipient, you know there are added challenges for your child to succeed in school and keep up with their peers. But did you know that your child has rights to receive extra support and resources that fit how he or she is able to learn? A mother and an expert in the field tell you how.

Hospital teacher Sarah Steinke, M.Ed., M.A., at Cincinnati Children’s Hospital Medical Center answers questions that she has received from parents of pediatric transplant patients about Individualized Education Programs (IEP) and 504 plans.

What is an Individualized Education Program (IEP) and how can it help my child?
Because of your child’s transplant, they meet the definition of having a medical disability that affects their ability to attend school and complete schoolwork like their peers. This makes your child eligible for an IEP. An IEP is an individualized education plan based on your child’s strengths and needs. A team including you and your child’s teacher will make annual educational goals for your child and plans for measuring these goals. Your child’s school will also need a written plan in the form of an IEP that states his/her needs for a different learning environment, such as a hospital school or homebound instruction – where teachers or tutors come to the child’s home.

What is a 504 plan and how can it help my child?
A 504 plan is based on civil rights law (Section 504 of the Rehabilitation Act of 1973) that provides an opportunity for equal access to education. It protects against discrimination because of a mental or physical disability and allows for reasonable accommodations. Children undergoing a bone marrow transplant will miss a significant amount of school that will make it difficult to keep up with school work.  Examples of accommodations a 504 plan can provide to your child include extra time on tests and assignments, a copy of notes, preferential seating, an extra set of textbooks at home and extra bathroom breaks. The process for eligibility does not require a formal request, but you need to work with the child’s school to make their needs known. 

An IEP and 504 plan sound similar. How do I decide which is right for my child?
If small adjustments will provide enough support for your child to succeed in school, a 504 plan is a good option.  For example, if your child is able to do well with extra time on tests, copies of notes from the teacher, an extra set of books at home to avoid carrying a heavy load, and any other accommodations his/her school will provide, then your child does not need an IEP. If your child has trouble keeping track of assignments or taking notes, gets overwhelmed often and his/her grades are suffering, then your child would benefit from an IEP. Private schools do not have to provide or follow IEPs or 504 plans unless they receive federal funding.  However, many private schools will meet the needs of your child by offering similar plans. In college, special accommodations are arranged through the disability services office.

If my child needs an IEP, what are the first steps?
A parent can request that their child be evaluated for special services at any time.  It is best to put this request in writing to a school administrator (you can also deliver it in person).   After you have made a formal request, the school will respond. Then, a school psychologist will make an assessment. After that, the IEP meeting takes place with you and the IEP team and the school will determine if your child is eligible for an IEP. 

Where can I go for help? 
Many hospitals have programs that can help with school communication and re-entry needs and are resources for parents and students needing either an IEP or 504 plan. 

Joe’s story
Joan talks about her son Joe’s experience and how the extra academic support and resources of an IEP plan helped him succeed.

Following transplant, my son Joe had low energy and suffered from fatigue.  He could not focus for long periods of time and needed to build up his physical strength. Also, his immune system was compromised and he had to go into the BMT clinic frequently for doctor appointments.

Joe had homebound instruction during the second half of 9th grade and an IEP for 10th grade. For his IEP, Joe was provided longer times on tests, extended deadlines for completing assignments, and shortened homework assignments as mastery was shown. He could also listen to books on tape. He could leave class five minutes early so he didn’t get bumped in the hallway and so he had enough time to get to his locker and the next class.  Joe was able to do his physical education requirements through a home activity log since he wouldn’t be able to keep up in a regular gym class.  He also took an independent study class to meet a graduation requirement.

Joe graduated from high school on time and has since graduated from St. John’s University with a degree in Business Management in May 2012.  In June he landed his first full time position with a marketing company in the Twin Cities.

My advice is to ask the school about any special services that may be available. Be persistent and be frank about what your child is struggling with. The letter from our BMT doctor was more than a page long and it really communicated how long and difficult the recovery can be.  This gave credence to what we were telling them.

For additional resources, check out:
Be The Match

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Organ donation and Facebook’s Life Event – an opportunity for registry members

After taking a personal interest in organ donation, Facebook CEO Mark Zuckerberg announced that organ donors can now add their organ donation status as a Facebook Life Event. Did you know that you can easily add your Be The Match Registry commitment on Facebook too? Here’s how:

Save the image below to your computer.

From your personal Facebook timeline page:

1. Click Life Event in the status update window at the top of your timeline
2. Select Health & Wellness
3. Select Other Life Event
4. Title the event Joined Be The Match Registry as a potential Marrow Donor
5. Upload the Be The Match image from above (right click to save
6. Insert the date you joined the registry – if you are unsure, please call us at 1-800-MARROW2
7. Add the location and a line or two about your story (optional)
• For donor/patient confidentiality reasons, please don’t post your donation date if you have donated marrow or PBSC.
8. Select your audience (next to the Save button) and click Save

Note: As with some personal information on Facebook, this Life Event status can be kept private or shared publicly or only with friends. In order to share this Life Event, you need to upgrade to Facebook timeline. To get started go to the Introducing Timeline page and click Get It Now. Learn more about upgrading.

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Patrick Abdul was a leader in Wagner College football team’s “Get in the Game. Save a Life” marrow donor recruitment campaign in 2008. Their efforts added more than 200 students to the Be The Match Registry.

Two of those students have already been called as a possible
match. One of them was Patrick.

A two-year-old patient
Patrick went on to donate to a two-year-old boy with anemia. “The future for that two-year-old little boy hopefully is long and healthy,” says Patrick.

He hopes that his recipient “gets to do everything that I was able to do as a kid, with no health problems.… And grows up to play football, to be a strong guy like me,” he adds with a smile.

The chance to save a life
The chance to save a life meant a lot to Patrick. He was happy to be part of his team’s community service event adding people to the registry, but he didn’t give it much thought. When he learned he was a match, it really hit home for him that this was something real, something that mattered. He could actually be the one to save another person’s life. It was a great feeling.

The donation process
He donated peripheral blood stem cells (PBSC), which required getting shots of a drug called filgrastim for five days. The filgrastim moves more blood-forming cells into the bloodstream where they can be collected for transplant.

• To learn more about donating PBSC, watch the PBSC donation video >

“I’m not going to lie,” says Patrick. The side effects of the shots felt like getting the flu.

“So that wasn’t too pleasant. But it was only for five days, and you’re giving someone a lifetime. It was 100% worth it to me.”

Patrick is featured near the end of the new “Get in the Game” video made to inspire coaches and players to get involved in adding donors to Be The Match Registry.

• Watch “Get in the Game” >

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Spread the word about Be The Match and the Do Something^SM Big campaign with a Be The Match video widget.

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Get the Widget

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Just click the Share button and select the site you want or copy the embed code. Add the
widget to your Facebook page, your Twitter account, your blog or wherever you are active
online and spread the word about the critical need for more bone marrow donors.

Visit http://bit.ly/du4aw6 for more on the Do Something Big campaign.

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The U.S. Congress plays a vital role in supporting our life-saving mission. To recognize our partnership with the federal government, the National Marrow Donor Program^® (NMDP) hosted a celebration on Capitol Hill January 21st to mark 40,000 transplants facilitated by the NMDP and 8 million members on the Be The Match Registry^®.

Celebration and education
The milestone celebration brought together members of Congress and their staff with transplant recipients, marrow donors and NMDP staff. The event was also an opportunity to educate members of Congress and their staff about the need to increase the number of unrelated donor transplants in the United States and to improve transplant outcomes.

Congress’ support of transplant
In 2005, the U.S. Congress passed the Stem Cell Research and Therapeutics Act establishing the C.W. Bill Young Cell Transplantation Program. As a contractor for this program, the NMDP works to grow and diversify the national marrow and umbilical cord blood registry and ensure more patients have access to transplant.

The Stem Cell Research Act will expire at the end of 2010 and must be renewed this year. In addition, the funding for the C.W. Bill Young Cell Transplantation Program must be appropriated by Congress annually.

• Join our Advocacy Action Network to support our efforts to educate Congress
• Learn more about NMDP’s contracts to operate the C.W. Bill Young Cell Transplantation Program

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What do Los Angeles, Atlanta, Houston, Minneapolis and Charlotte have in common? This spring, Be The Match^® ads will begin appearing in those metro areas.

If you see one of our ads, be sure to tell your friends that YOU are part of Be The Match –- and why they should be, too.

A successful first year for our new name
We introduced Be The Match as the new name of our life-saving mission, the donor registry and our foundation in April 2009. We began our campaign to get the word out with ads on television, radio and billboards in just two cities: Charlotte and Houston. Through surveys, we learned our Be The Match ads made a strong impression. People remembered the name and remembered what it meant — the opportunity to save a life through marrow donation. So this year, we’re aiming to build on our success by expanding our campaign.

Reaching more cities this spring
This spring we’ll be promoting Be The Match with ads in Charlotte, Houston, Los Angeles, Atlanta and the Minneapolis/St. Paul metro areas. Ads will run on TV, radio, billboards, newspapers and movie screens. We’ll also be launching new public service announcements to 10 additional cities.

What about the rest of the country?
Why not run ads nationwide? Many television and other media outlets have kindly agreed to support our cause by giving us extra air time and advertising space, but advertising is still expensive. Our challenge is to reach people effectively, while carefully managing costs.

One way we are reaching people nationwide is through our growing Be The Match communities in social networking spaces like Facebook and Twitter. Supporters like you have been a big part of growing these communities –- thank you!

Find us on:

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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

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Be The Match : 30 Television Commercial

Visit BeTheMatch.org to learn more about the many ways to get involved. There are several ways to help support patients:

• Grow the registry by becoming a member or donating cord blood
• Make a tax-deductible contribution
• Connect with the Be The Match Community