Blood Cancer Facts You Should Share

• $100 provides 7 patients access to an informational teleconference about their specific blood cancer disease.

• $150 provides 15 teachers with an educational Pediatric Instructional Manual to assist a child with cancer returning to school after treatment.
• $500 provides a patient with leukemia, lymphoma or myeloma with Patient Aid to support their medical treatment and travel to medical appointments for one year.
• $250 provides a monthly Family Support Group Program for one year for 10 patients.
• The Leukemia & Lymphoma Society is the world’s largest voluntary health organization dedicated to funding blood cancer research, education and patient services.
• More than 617,000 Americans have leukemia, Hodgkin or non-Hodgkin lymphoma or myeloma. Every five minutes, someone new is diagnosed with blood cancer. Every nine minutes, someone dies.
• Leukemia is the leading cause of disease-related death among children under age 15.
• Lymphomas are the most common blood cancers, and incidence increases with age.
• The survival rate for myeloma is only 30 percent. Incidence is twice as high among African Americans as for all other races.
• More than 75 percent of Society expenditures are used on mission-related activities.
• With more than 8,000 advocacy volunteers throughout the country, the Society’s voice is being heard by those responsible for legislation to fund blood cancer research and educational programs.

Source: lls.org

September: Childhood Cancer Awareness Month

As parents, we go to great lengths to protect our children from harm – starting at the moment they’re born or even at the moment we have a positive pregnancy test. We buy baby gates and monitors. We watch the latest toy recalls. We teach our kids to not accept candy or rides from strangers and to “just say no”.

However, when a family hears the diagnosis that their child has cancer, it can be quite overwhelming, if not devastating.

Childhood Cancer Affects the Whole Family

“Childhood cancer is a family disease since it affects everyone in the family’s system… this includes families, school and friends, the total environment of the child,” says Nancy Cincotta¹, MSW, LCSW, ACSW, BCD and Psychosocial Director at Camp Sunshine [http://www.campsunshine.org].

Cincotta encourages families find a group as a way to cope and find support. “The Leukemia & Lymphoma Society is a tremendous resource for families on back to school initiatives, on information services for financial support.”

When we raise money for Light The Night, we help support families as they deal with first diagnosis and endure their cancer journey.

Through the Patient Services programs and resources such as patient education programs and the Information Resource Center, the Society made 4.2 million contacts with patients, caregivers and healthcare professionals in FY’06. The Family Support Groups and First Connection served nearly 16,000 people.

This support is free to families because of money donated through Light The Night and other Society programs.

Survivorship Issues

Currently, there are approximately 270,000 living survivors of their childhood cancer and their cancer treatment². This group continues to grow as advanced, less-toxic treatments are developed.

“Newer therapies are based on improved understanding of the potential treatment complications of those earlier therapies,” said Leslie L. Robison³, PhD, Chair of the Department of Epidemiology and Cancer Control at St. Jude, principal investigator of CCSS, and senior author of the study.

While hopeful, it’s expected that three-quarters of this group will develop a chronic health problem and 40 percent may experience a “serious, life-threatening, disabling, or fatal condition” within 30 years of the initial cancer diagnosis.

Until targeted-cell therapies advance and only the cancer cells are affected and not the normal tissues or more advanced treatments are developed, many survivors will continue to be afflicted with cognitive and late effects from radiation and chemotherapy.

For more on cancer survivorship and a continuing series on childhood cancer, visit http://www.leukemia-lymphoma.org/all_page?item_id=74410.

Future Treatment Options and Prevention for Childhood Blood Cancer

Thirty years ago, a child’s cancer diagnosis most likely meant a death sentence. But, with years of research, a family can now get through cancer treatment with increased hopes for survival. A cure for blood cancers still has not been discovered, but the future holds hope for a breakthrough with continued funding and research.

For the past three years, Joseph Wiemels, PhD, has been the recipient of funding because Friends of Heroes and affiliates raised over $100,000 each year to achieve a grant-naming opportunity bestowed by the Society.

“Wiemels is acknowledged as a mainstream expert on the origins of acute lymphoblastic leukemia.”⁴

He led the research discovering that most dormant childhood leukemias begin before birth and he continues to research in hopes to identify the causes – dietary, environmental, or otherwise – that could result in the potentially harmful genetic mutation.

“Unraveling the causes and timing of the mutations that lead to leukemia, may allow us to predict and prevent this devastating disease,” said Wiemels⁵.

What can we do?

Once again in 2007, Friends of Heroes hopes to reach the $100,000 needed for the grant-naming opportunity so we can continue to support Dr. Wiemels’ research. We will also be supporting valuable Patient Services with the money we raise for Light The Night.

This September, help us honor Childhood Cancer Awareness Month. Please join us as a donor, a walker or an affiliate team so we can continue to help pediatric cancer patients and their families. Your help makes a difference to improve the lives of patients and can fund the necessary research to find a CURE!

By National Team Co-Captain Jenn B.

Sources:

¹ http://www.leukemia-lymphoma.org/graphics/National/EI2530DFinalTranscription.pdf

² http://www.accessmedicine.com/content.aspx?aid=2800901

³ http://www.mskcc.org/mskcc/html/71319.cfm

⁴ http://pub.ucsf.edu/today/cache/feature/200703082.html

⁵ http://www.ucsfhealth.org/adult/health_library/news/2002/05/9747.html

Swinging into September

I love autumn. The summer temps finally start to cool and the leaves start to change to beautiful hues of orange, red, yellow and brown. September signifies back-to-school and back to living on a schedule.

In the last few years, September has taken on new meaning for me. It is Childhood Cancer Awareness month and I reflect back to September ’04 when I was deeply moved by Allie Scott’s life and passing – her family was living my worst imaginable nightmare.

I knew that I wanted to do something to help end the horror of childhood cancer. Each September means my Light The Night walk is around the corner and I have an opportunity to make a difference.

You can too.

On September 7^th, the first Light The Night walks will commence. Are you ready? Have you registered to join us and make a difference? It’s not too late and it’s very simple.

• Go to http://teams.lightthenight.org/friendsofheroes to search and join a walk.
• Register to receive your active.com account and you can start fundraising online!

September is also Friends of Heroes Awareness Event month. Have you held an awareness event or considered setting one up? Because there is no cure for blood cancers, getting the word out is vital. Through awareness events, we can share why a cure is so important and how Friends of Heroes can make an impact with the grant naming opportunity. (See the Childhood Cancer article to see how it will make a difference!)

Last Thursday, I held an awareness booth and had an amazing night. My co-captain’s daughter raised $13 in paper balloon sales and the contacts we made were priceless. Many people don’t realize that children can and DO get cancer. A 3^rd grade girl who was selling bracelets gave us some of her profits because she wanted to make a difference. A young boy spotted us and introduced his mom, a cancer survivor. She came up to thank us, grateful that she could continue being a wife and mother due to recent research.

This reinforced to me why Friends of Heroes is so important. The money raised through fundraisers like Light The Night has advanced research and developed therapies which SAVES LIVES. It’s incredibly motivating to know that what we do as Friends of Heroes can and will make a difference!

Still not convinced to join this year?

We really need you. Our walkers and team captains are the heart and soul of our team. We had changes this year with a new team name and new logo, a new website and a new forum, but our mission and purpose remain the same. Childhood cancer has not gone away. We need you to help us make a difference and to help us reach the $100,000 to achieve the grant naming. I can’t promise you prizes or that big donations will come your way, but you’ll know you were part of an amazing team that is actively making a difference in the war on cancer. Please join the Friends of Heroes team!

By National Team Co-Captain Jenn B.

p.s. There is still time to fundraise! It’s easy to forward your active.com site or add it to your email signature. Check out the Friends of Heroes Point Challenge and select a few things you can do to raise money and earn points for a prize. Every donation counts whether it is $1, $10, or $100!

p.s.s. We’d love to have you as a team captain! If you’re interested, email Lynette at tcrelations@friendsofheroes.org with your name and walk location for more information.

Renee Rubio, Team Captain, and Friends of Heroes in the news

Walk for ‘heroes’ fighting leukemia

By Loni Nannini

Special to the Arizona Daily Star

Tucson, Arizona | Published: 08.26.2007

There is life after leukemia, and Renee Rubio and the Friends of Heroes are taking steps to ensure it by raising funds through the Light the Night Walk for the Leukemia & Lymphoma Society.

Rubio is the captain of the Tucson contingent of Friends of Heroes, the largest national Friends and Family Light the Night team in the history of the Leukemia & Lymphoma Society. Last year, the local team raised more than $19,000 to fund pediatric blood cancer research and patient services; the national team had raised almost $850,000 as of January. Rubio said the endeavor is a labor of love for many of those involved.

“We consider the kids that are going through this heroes. It’s amazing how resilient they are,” said Rubio, who has experienced the reality of leukemia firsthand with her grandson, Gavin Kelley. Gavin, 5, is a survivor of acute lymphoblastic leukemia and is undergoing chemotherapy in Jacksonville, Fla.

Read more at:
http://www.azstarnet.com/allheadlines/197670.php

Article quoted from http://www.azstarnet.com

Yokayo Bio-Fuels: Affiliate Team Profile

Can you share a little bit about your Affiliate team Yokayo Bio-Fuels?

Yokayo Biofuels is a small company located in Ukiah, California. We make and sell biodiesel, which is made from used restaurant oil and grease. You can read more about us at www.ybiofuels.org.

Have you been involved with Light The Night in the past? Had your company?

I have been for the last three years, through the various incarnations of Friends of Heroes, (Allie’s Angels, Friends of Allie). The first year, I was unable to travel to the actual event, as I’d had a c-section and a difficult recovery not too long before. I had a balloon sent to me by the local office, and I walked down the main street in my town with my two children in their stroller. The next two years, I was the team captain of a really small team, mostly of my family and me. I have raised almost $2000.00 for the LLS in those three years.

The company I work for has never participated before, but oddly enough, there is a more personal connection. My boss’s sister works on the pediatric cancer ward at UCSF, and is one of the nurses for our honored child, Jackson.

What made you decide to become apart of FOH as an affiliate?

The company I work for is very environmentally conscious, and as cancer is often caused by exposure to chemicals, they felt right this was a good cause for them to be involved with.

How did you go about approaching your company to see if they might be interested in forming a Light the Night Team?

I had to do a presentation at one of our general employee meetings, which I messed up completely. I started crying five lines into my speech. I had pictures of Allie and the other child I walk in memory of, Cole Regan, taped to the wall behind me, and I couldn’t even get through it. I had to have my boss take over for me. Needless to say, it must have been a good speech, because everyone agreed to participate in some way.

Do you have any advice for someone that is thinking of approaching their own place of employment about forming a company affiliate team?

The worst thing your company can say is no, and you won’t know if you don’t ask.

Do you think working as a LTN team has had any effect in your actual office environment?

No, it’s a pretty tight knit group of individuals already.

What are your team goals for this year?

We have a combined goal of 1000.00 between the Yokayo Team and the Friends of Heroes team.

How is your team organizing or planning for the walk? Does your team have any fundraisers or events planned leading up to the walk?

The weekend of August 18th and 19th, there is a huge festival that we are involved with called SolFest, and we are going to have a booth there, and be asking for donations from people that stop by our booth. It usually draws in about 10000 people in two days, so I hope that we can earn a lot of money that way.

We are also going to raffle off 50 gallons of fuel to our local customers, and sell the tickets for 10.00 dollars a piece, with a limit of 200 tickets. I have a feeling that will sell out rather quickly, because, honestly, who doesn’t want a chance to win free fuel? We are also just going to ask for donations from our customers, either when they walk in the office or by letter to the ones that we deliver to.

You shared with us this is the first year for your affiliate team, however you have walked for FOH in previous walks, can you share a little bit about your LTN walk last year?

Last year our walk was the last Friday in September, and it was a beautiful night. My husband and my children were my teammates, and we were “honorary” members of another affiliate team, Jackson’s A.L.L. Stars. Every year when I have seen Jackson at LTN, I have such a hard time believing he has cancer; he is so healthy and vibrant. Seeing that makes me want to continue the fundraising effort, because every child should be able to win the fight against this awful disease just like Jackson.

I know that no matter how many times I participate in Light the Night, I will always be in awe of how beautiful the balloons are when they are lit up. I just wish that their beauty could be used to signify some other purpose.

Anything else you would like to share?

I am so proud of this remarkable group of people, and proud to be a part of it! I know in my heart that we will reach our 1 MILLION DOLLAR GOAL!

Jenny Scott, if you are reading this, thank you so much for having the bravery to share Allie’s story with the world, and for opening all of our eyes to the world of pediatric cancer. The people that have opened their hearts and given their time to support this cause have renewed my faith in humanity as a whole. Allie’s story was just the beginning of something so much bigger, and we should all be so very proud of all that we have accomplished as a result of her life. I know my life is forever changed, and I am grateful for it.

Patient Services Profile: The Trish Green Back To School Program for the Child with Cancer

Each year, approximately, 12,100 children are diagnosed with cancer in the United States. Treatments include surgery, radiation, chemotherapy, and stem cell transplantation. Even after the initial treatment, child patients may face many years of illness, treatment, stress and post-treatment adjustments.

Returning to school can offer a feel of normalcy for families after treatment.

In an effort to support families and ease the transition from active treatment to daily life for pediatric cancer patients, The Leukemia & Lymphoma Society and Lance Armstrong Foundation developed a program to increase communication among healthcare professionals, parents, patients and school officials (campus nurses, counselors, teachers, and administrators).

The objectives of the program are to educate attendees and enable them to:

• Describe common childhood cancers and treatments
• Identify challenges cancer survivors face upon returning to school and throughout their time in school and college
• Understand laws that protect childhood cancer survivors’ rights
• Have strategies to help meet the students’ short- and long-term educational needs
• Access resources that support schools and families including those from The Leukemia & Lymphoma Society and the Lance Armstrong Foundation

Teachers can learn what accommodations might be needed for their returning cancer student and can help classmates understand what the student is going through. Because of their daily contact with the student, teachers also play a key role if any health concerns should arise in the classroom.

Cancer survivorship is a lifelong journey, and school reentry is a major milestone in that journey.

For more on the Trish Green Back To School Program, visit your local Society chapter for live educational programs and materials, videos and other printed resources. Online program information at The Leukemia & Lymphoma Society Website.