Abby Miller Performing at Candlelighters Awareness Tree

The 2009 Gold Ribbon Awareness Tree was lit on December 12th at the Old Post Office Pavilion. If you weren't there to see Abby Miller perform Keep Holding On by Avril Lavigne, check out this video!

Enjoy!

Parent Night - Relax and Enjoy!!

Parents,

Hate to wrap packages? Are you stressed about the holidays? Have cabin fever from flu concerns and your child's neutropenic precautions? Come join us for a fun evening of fellowship, dinner from Noodles & Co., fresh baked treats and holiday music. Make 3D gift tags and cards with Stamp It Up! consultant Rose-Ellen Eastman while we beautifully wrap your gifts! Oh, and what could be better than winning a gift certificate door prize? Click on the flyer below for details.

Happy Holidays!

Light the Holidays with HOPE - Awareness Tree Lighting!

'Light Up the Holidays with Hope’ has become our nation’s largest annual childhood cancer awareness event. Each year during the December holiday season, a 23 foot tree is placed in the lobby of a building in Washington DC. The tree is solely decorated with thousands of gold ribbons (the symbol for childhood cancer). Each ribbon bears the name of a child who has, or has had cancer. The tree glitters strong in our nation’s capitol for all to see. Thousands each year are touched as they are reminded of our nation’s youngest cancer patients.

Each year, a lighting ceremony is held to light the tree, honor our cancer children, and enjoy some fun activities with our families and friends. The event includes guest speakers, musicians, and entertainers that delight the children. Time is given to all families attending the event to come to the podium to pay tribute to their child who was diagnosed with cancer.

Following the program there is a reception and carnival for the children. Activities include spin art, sand art, crafts, face-painting, magic, and carnival games.

Click here to purchase a ribbon with your child's name for the tree or to search ribbons already purchased for 2009.

November 10th - Behavior & Development during/after Childhood Cancer

Save the date! Click the flyer below for more info:

Teen Night at LWC - Friday, Oct. 23rd

Calling all teens! Come check out the new teen room at LWC - click on flyer below for details:

TODAY 3pm EST through Monday 10/19 = America's Giving Challenge!

Please help us win $1000 for receiving the most donations in a 24 hour period. Already we are in 6th place! You only have to give $10 to have your donation count. The contest is for the highest number of donors rather than the total amount that is raised!

Please pass this on to your friends and family. Donate starting at 3:00 pm Sun Oct. 18th and not later than 3pm on Monday the 19th, by clicking on this direct link: http://www.causes.com/donations/select_donation_method?m=eed19519&cause_id=168975

Thanks for your support!

Lisa Tignor
Laurie Weiss
Gail Scheller
Sheri Schaffer
Meg Crossett
Jen Click
Tasha Virostek

Pediatric Oncology Support Dinner ~ Oct. 27th

Our next support group and dinner will be held Tuesday, October 27th. Parents, grandparents, caregivers and staff are welcome to attend.

Childhood cancer affects all people, so we thought it might be fun and interesting to have a potluck dinner with foods from different countries. So, if you'd like to bring something, let us know. You don't have to bring a dish to attend - we always have PLENTY of food left over!

Please click on the flyer below:

America's Giving Challenge!

Hi everyone,

Our cause just entered in America's Giving Challenge, which gives us a chance to win $50,000!

Please donate today: http://www.causes.com/donations/select_donation_method?m=eed19519&cause_id=168975

To win, between now and November 7th we have to get the most donations to our cause (every person can donate once per day and have it count as a unique donation). We can also win daily awards of $1,000 and $500 if we can get the most people to donate in any 24-hour period. The great thing about this Challenge is that it doesn't matter how much you give, but instead how much you do to encourage friends and family to get involved in our cause. We all need to come together and start promoting the cause if we want to win.

Each of us has tons of friends on Facebook who we can ask to donate to our cause. But let's think big too—can you put our cause in your email signature, can you throw a party and get people to donate through the cause when they enter, can you organize other people to go out and fundraise from all of their friends? As you reach out to your friends be sure to tell them why this cause matters to you. The possibilities are endless so let's talk about what we can do to win on the Wall of the cause or by replying to this bulletin.

I think we can do it! But it's going to take all of us. Check out the Giving Challenge (www.causes.com?m=eed19519), then visit our cause to see how we're doing so far and get involved.

Donate right now by going to http://www.causes.com/donations/select_donation_method?m=eed19519&cause_id=168975

Let's win $50,000 for our cause!

Thank You!!!

Helping the Child with Learning Problems After Transplant

An interesting and helpful article from BMT Info News:

Cognitive problems, also referred to as neurodevelopmental problems, are problems with a child’s ability to learn, remember, and perform mental tasks. The problems are caused by damage to the brain and blood vessels in the brain, or interruption in the development of the brain. Some children who undergo a bone marrow transplant (BMT) have an increased risk of developing cognitive problems after treatment.


Click here to read more...

Candlelighters Support and H1N1 Precautions

DC Candlelighters has been advised by both Children's National Medical Center and Inova Fairfax Hospital that due to H1N1 precautions, the monthly support group teas at both hospitals will be temporarily suspended. Please check out our event schedule for the list of parent night dinner meetings -- we hope to see you at the next one on Oct. 6th - please click on the flyer below:

Former Miss Virginia Tara Wheeler

Miss Virginia 2008, Tara Wheeler supports childhood cancer by raising money and awareness! There She Is ... and Hair, It Goes!

During her reign as Miss Virginia, Tara wanted to shave her head for St. Baldrick's Day, but the pageant would not allow it unless she was able to raise $500,000 in pledges...now, three months after passing the Miss Virginia torch, Tara Wheeler has fulfilled her promise.

We think she's beautiful!

CNMC Tea

No Candlelighter's Tea at Children's today due to the scare of the H1N1 virus, the hospital is limiting visits from groups. What a shame. Sorry parents-we will try again next month!

September is Childhood Cancer Awareness Month

Did you know?

Childhood Cancer Facts

* Each school day, 46 children are diagnosed with cancer.

* One in 330 children will develop cancer by age 20.

* Each year in the U.S. over 12,600 children are diagnosed with cancer.

* Although the 5 year survival rate is steadily increasing, one quarter of children diagnosed with cancer will die 5 years from the time of diagnosis.

* Cancer remains the number one disease killer of America's children - more than Cystic Fibrosis, Muscular Dystrophy, Asthma and AIDS combined.

* 80% of children have metastatic disease at time of diagnosis as compared to only 20% of adults.

* There are currently more than 270,000 childhood cancer survivors in the U.S.

* Late effects of childhood cancer treatment are common in survivors, and
approximately one-third are moderate to severe.

DC Candlelighters and Cox Farms Day!

DC Candlelighters families are invited to spend the day at Cox Farms on September 19th! Please click on the attached flyer for details. We hope to see you at the farm!

Pediatric Oncology Parent Night ~ August 26th

Super Sibling Support Day

Looking for Stories of Health Care Problems for Children with Cancer

Dear families,

There is a possible opportunity to address the issue of health care insurance coverage problems for our nation’s children with cancer, as well as young adult survivors of childhood cancer with the White House Administration. We are looking for compelling personal stories where health care coverage was difficult or impossible to get for your children with cancer.

These can be stories of lack of coverage for cancer drugs on treatment, lack of coverage for experimental treatment, clinical trials etc.

We also are in need of stories representing the huge issue of uninsurability of our young adult survivors of childhood cancer population. As you know too well, this can be from a combination of things – unemployability due to cognitive/chronic health issues leading to lack of access to health care coverage through an employer; long term dependency upon parents physically and emotionally but too old to be on a parent’s plan; too expensive to purchase as an individual due to previous cancer diagnosis etc.

If you have a story to share, please email Ruth Hoffman at: ruthihoffman@gmail.com and include your contact information by this Friday, August 14th. We will be collecting stories and possibly contacting a few of you about the possibility of attending a White House briefing during Sept. Childhood Cancer Awareness Month.

Thank you!

More Late Effects Risks for Cancer Survivors...

Childhood cancer treatment may raise diabetes risk

Pregnant Cancer Survivors Face Riskier Deliveries

Childhood Cancer Survivorship Research and Quality of Life Act of 2009

The following press release was received today. Other co-sponsors from the DC area include Elijah Cummings (D-7th MD), Eleanor Holmes Norton (D-DC) and Jim Moran (D-8th VA). The bill was introduced in April. Check out the current co-sponsors of the bill. If you don't see yours listed, give them a call and ask them to sign on!


WOLF AGAIN COSPONSORS MEASURE TO HELP CHILDHOOD CANCER SURVIVORS

Washington, D.C. -- Rep. Frank Wolf (R-10th) today announced that he is again cosponsoring legislation aimed at improving the long-term health and well-being of childhood cancer survivors.

H.R. 2109, the Childhood Cancer Survivorship Research and Quality of Life Act, is similar to a measure that Wolf cosponsored in the 110th Congress. If enacted, this legislation would expand cancer control programs to improve the health status of childhood cancer survivors and establish grants at the National Institutes of Health to conduct research on survivorship, train health professionals, and develop model systems for monitoring and caring for cancer survivors. It would also establish grants for childhood survivorship clinics and organizations that improve physical and psychosocial care for child survivors.

"Helping cancer survivors, especially children, get the care they deserve should be a priority in the 111th Congress," Wolf said.

Wolf has long been committed to helping cancer survivors. He is a cosponsor of nearly a dozen other cancer-related bills, including the Comprehensive Cancer Care Improvement Act, the Pancreatic Cancer Research and Education Act, and the Breast Cancer Patient Protection Act. Wolf has been recognized over the years by the National Breast Cancer Coalition for his continued support for legislation addressing the needs of breast cancer patients.

Wall Street Journal Article on Late Effects

Childhood Cancer Survivors Face New Threats as Adults

NCI Cancer Research Highlights

Breast Cancer Risk in Survivors of Childhood Cancer Quantified

CureSearch Applauds the U.S. House of Representatives Taking the First Steps to Fund Childhood Cancer Research

CureSearch Applauds the U.S. House of Representatives Taking the First Steps to Fund Childhood Cancer Research

Clyde cancer cluster spurs legislator into action

Clyde cancer cluster spurs legislator into action

For Kids: Curious about Cancer?

Life with Cancer is offering another kids program next Tuesday:

Learn about cancer through discussion and activities and find ways to manage emotions and changes that come when someone in the family has cancer.

Tuesday, June 23, 2009

10 a.m. - 4 p.m.

Life with Cancer Family Center
8411 Pennell, VA 22031

Through discussion, art and games children ages 5-12, will have an opportunity to learn about cancer and its treatments, talk about the feelings and changes they are experiencing, and meet with other children who understand what it's like.

To register contact Jenny Eckert, LCSW, Children's Program Manager at Jennifer.Eckert@inova.org or at 703-698-2536.

Be The Match Marrowthon (350 x 380)

Kids with Cancer and Super Sibling Support Day

Life with Cancer is offering a combined day for kids with cancer and their siblings. See the attached flyer for more details!

Planet Cancer

This is an excerpt written by a mom of a medulloblastoma survivor on the 5th anniversary of his surgery.
__________________________________________________________

Planet Cancer

For us it was like someone had just pushed us off of this planet that we were on and we fell down down down until we reached the planet of childhood cancer with a thud. Everything was foreign and frightening. We could hardly breathe let alone comprehend all that he was telling us about what the year ahead would look like. We didn't really want to know him because he was a pediatric oncologist (though he was warm, kind, and friendly). We didn't really want to know anyone else on that planet either right at first because we didn't want to be there.

But, we learned very fast about that planet and we quickly started wanting to meet the other people there or who had been there because we had so much in common. We came to love and appreciate all of Doug's medical caregivers. It became hard at times to relate to people living on our previous planet.

We discovered that the cancer planet was divided into continents and countries just like our previous planet. We lived on the coninent of pediatric cancer, in the country of brain tumors and the city of medulloblastoma. When someone from the other planet would tell us about Great Aunt Sally who had stomach cancer they thought that we could relate, but though it was on the same planet it was on a whole other continent.

Those who wanted to help most often flew in planes at 25,000 feet and dropped in supplies. The supplies were much appreciated because it's very hard to do the basic everyday things that are needed to survive when you live on planet cancer in the pediatric country. It often felt like tar on our feet moving through massives webs. Some days we could barely move at all. The airplane people were often kind and might try to ask us questions, but the noisy engine and the distance made it difficult. The ones who came down to visit were most often ones who had lived somewhere on that planet before. It is a rare person who's never lived on planet cancer especially in the country of pediatric cancer who comes and walks the paths and trudges through the jungles with us. That's why it was good to connect with the others who had no choice to leave just like us.

When we came back to this planet it took a very long time to adjust. My friend who lived overseas for many years said that it took her about 3 years to start feeling comfortable back in the USA. I think that we were on planet cancer for a year, had to visit regularly for another year and now it has taken us these last 3 years to adjust and start feeling more comfortable back on this planet. I had no idea that it would take this long and what that adjustment would be like. And, of course we hope that we never are forced back to planet cancer.

I'm Cured....Now What? A Conference for Teen and Young Adult Survivors of Childhood Cancer and their Parents

July 25, 2009
8 am - 5:00 pm
Life with Cancer Family Center
Fairfax, Virginia

I'm cured . . . . now what?

If you are a young person (16 and over) who is a survivor of childhood cancer, join us for this FREE and FUN one-day event. If you are a parent of a teen or young adult who is a survivor of childhood cancer, this conference is for you, too.



LEARN ABOUT:

Late Effects
Fertility
Stress-Busters and Complementary Therapies
Nutrition and Bone Health
Resources

• TRY
Zumba, Kickboxing, and Yoga (don’t forget your sneakers!)
Reiki and Massage

• SHARE COMMON CONCERNS
For Survivors - Sexuality, Dating and Disclosure
For Parents - Empowering and Letting Go

• BUILD YOUR OWN TREATMENT SUMMARY

• MEET NATIONALLY RECOGNIZED EXPERTS AND
SPEAKERS

Wendy Hobbie is the Coordinator of the Long-Term Follow-up Clinic for childhood cancer survivors at Children’s Hospital of Philadelphia, one of the first comprehensive follow-up clinics in the U.S. In addition to co-authoring Childhood Cancer Survivors, Wendy has published numerous articles on late effects, the role of the nurse practitioner in follow-up care, and risk taking behaviors of childhood cancer survivors. She is the editor of a textbook for professionals, Survivors of Childhood Cancer: Assessment and Management, and is a consultant, researcher, and frequent lecturer.

Nancy Keene is a nationally respected writer, advocate for children with cancer, and parent of a long term childhood cancer survivor. She has written several books including Childhood Leukemia: A Guide for Families, Friends and Caregivers; Childhood Cancer: A Parent’s Guide to Solid Tumor Cancers; Chemo, Craziness & Comfort; Working with Your Doctor; and Your Child in the Hospital. Nancy co-authored Childhood Cancer Survivors: A Practical Guide to Your Future with Wendy Hobbie, and has edited Educating the Child with Cancer and Childhood Brain and Spinal Cord Tumors.

Dr. Jill Ginsberg is Director of the Cancer Survivorship Program at Children’s Hospital of Philadelphia. She is a graduate of Cornell University Medical College, completing her pediatric residency at Johns Hopkins Hospital and hematology/oncology fellowship at CHOP. Her research includes the medical and psychosocial late effects of cancer therapy and is particularly interested in fertility preservation. Through her efforts, the Children’s Cancer Center at CHOP was the first pediatric program to be named a “Center of Excellence” by Fertile Hope.

Josh Sundquist is a Paralympics ski racer and nationally known inspirational speaker since age 10. He has been featured on CNN Heroes and in USA TODAY. At nine Josh was diagnosed with bone cancer. He underwent chemotherapy and his left leg was amputated. Josh was “cured” of the disease at age thirteen. He took up ski racing, and was named to the US Paralympics Ski Team for the 2006 Paralympics in Torino, Italy. He has been a keynote speaker at schools, Fortune 500 companies, and at the White House.

Sage Bolte is a Certified Social Work Oncology Counselor at Life with Cancer and a PhD candidate in Social Work at Catholic University in Washington, DC., researching the impact of cancer/treatments on young adult survivors’ sexual self. She is a frequent national speaker on sexuality and cancer, provides individual and family counseling, and facilitates breast cancer and partner support groups.

Dr. Rebecca Selove is a clinical psychologist at Children’s National Medical Center. She is particularly interested in the quality of life of survivors of pediatric cancers and provides evaluations and counseling in survivor follow-up clinics in DC and Fairfax. She completed her Ph.D. at Vanderbilt University, a Masters in Public Health from St. Louis University and has over two decades of experience in mental health, medical and university settings.

Nancy Sacks is a Research Coordinator and Registered Dietician with the Long Term Follow-up Clinic for childhood cancer with Children’s Hospital of Philadelphia. She co-chaired the Nutrition Sub-Committee of the Children’s Oncology Group (COG) helping to develop guidelines for nutrition support. She has participated in numerous research projects and publications in the areas of cancer nutrition, complementary alternative therapies, informed consent/compliance of adolescents with chemotherapy and is a frequent national speaker.

• NETWORK WITH OTHERS!


Please visit Life With Cancer to view the program brochure and to register.

Jel Sert adds Childhood Cancer Gold Ribbon to Fla-Vor-Ice Packaging!

We have exciting news to share from our national office!


Kensington, MD - Candlelighters Childhood Cancer Foundation is excited to announce the production of the first Gold Ribbon specially marked commercial product. Available now in your grocery store are specially marked boxes of Jel Sert's Fla-Vor-Ice. Fla-Vor-Ice® was introduced by Jel Sert in 1969, and quickly became the leading freezer pop in the United States. The Jel Sert Company is proud to extend its corporate commitment to sponsor the Gold Ribbon for Childhood Cancer on its Fla-Vor-Ice products.

Jel Sert’s Fla-Vor-Ice has delighted families for over 35 years with great tasting freezer bars made with 25% real fruit juice. Now proudly displaying the gold ribbon for childhood cancer awareness, Fla-Vor-Ice is helping Candlelighters Childhood Cancer Foundation support our nation’s littlest cancer patients.

To thank Jel Sert for their commitment to our nation's children with cancer, we are asking that you take a few minutes to thank the company. You can email them using the drop down at the bottom of the page at: http://www.jelsert.com/contact_us.asp or you can call them at: 800-323-2592. Please let them know how thrilled we are that they have chosen to support this childhood cancer cause.

We also encourage you to check our your local grocery stores and make sure that they are carrying the specially marked Fla-Vor-Ice product.

Finally, we would like to compile pictures of our children enjoying eating Fla-Vor-Ice. Please email any pictures that you have to Ruth Hoffman at: ruthihoffman@gmail.com. See our website for examples of two children who are excited to see the gold ribbon on the product: Candlelighters - Jel Sert

Now that we have our FIRST specially marked gold ribbon product, let's work together to see more of them! If you have contacts to other company management, please contact Ruth so that we can let them know of Jel Sert's commitment, as well as work with them to discuss how their company can build awareness of childhood cancer too!

Together we can build awareness of childhood cancer!

Childhood Cancer Advocacy

Each year families affected by childhood cancer are mobilized to visit Capitol Hill to ask Congress to make funding for childhood cancer an urgent national priority. Click on Reach the Day - Conquer Childhood Cancer for more information.





From the Leukemia & Lymphoma Society's newsletter:

Funding Sought for Conquer Childhood Cancer Act

The Caroline Pryce Walker Conquer Childhood Cancer Act unanimously passed Congress in July 2008. This law authorizes $30 million annually for five years to fund pediatric cancer research, awareness programs and the creation of a national childhood cancer registry. But while this funding was "authorized" last year, it needs to be "appropriated" each year as part of the annual budget process.

Despite a nearly 80 percent survival rate for pediatric cancer patients, more than 2,000 children lose their battle with the disease each year. In fact, cancer remains the number one cause of death from disease among children. Full funding of this law would do the following:

- Increase pediatric cancer research at NCI to enhance doctors' knowledge of the causes, diagnosis, treatment and long-term effects of the disease in children.

- Expand public awareness of childhood cancer through education programs, peer-to-peer and parent-to-parent support networks, psychological counseling and other support services.

- Create a national childhood cancer registry at the Centers for Disease Control and Prevention to track the epidemiology of pediatric cancer.

These funds are critical to advancing our knowledge and treatment of cancer in children. Despite the advances that have already been made, the treatments for some childhood cancers are inadequate. And nearly two-thirds of all childhood cancer survivors experience late-effects of their cancer and treatment, such as psychosocial effects and an increase in the development of secondary cancers.

LLS has joined in a letter as part of the Alliance for Childhood Cancer, urging Congress to provide funding for programs created under the Act. Advocates should be on the lookout in the near future for ways they can play a role in urging their representatives to support funding for these vital programs. The Alliance for Childhood Cancer letter is attached below:

Free Teleconference from Beyond the Cure

Thursday, July 23, 2009 1:30 p.m. CT

Nutrition During and After the Treatment of Childhood Cancer
Presenter: Terezie Mosby, MS, RD, CSP, IBCLC, LD/N, Dietitian for Bone Marrow Transplant, Leukemia and Immunology Outpatient Services at St. Jude Children’s Research Hospital

Goal: Managing nutritional concerns during the treatment of childhood cancer is a challenge. During this teleconference learn how to approach nutritional concerns that impact a child’s diet during treatment and identify good eating habits after treatment that promote good health and healing.

The final 15 minutes will be open to a question and answer session.

Deadline to register for this teleconference: Monday. July 13, 2009.

Free Telephone Education Workshop - June 23rd

The Seventh Annual Cancer Survivorship Series: Living With, Through and Beyond Cancer, Part III: Survivors Too: Family, Friends and Loved Ones - Managing the Fatigue of Caregiving

Presented by:
National Cancer Institute
Lance Armstrong Foundation
Intercultural Cancer Council
Living Beyond Breast Cancer
National Coalition for Cancer Survivorship

Date: June 23, 2009
Time: 1:30 p.m. - 2:30 p.m. ET


Click here for more information and to register

June 10th Parent Night - How to Keep Your Child Moving & Fit During Treatment

Please click on the flyer. We hope to see you on the 10th!

Parent Support Group ~ May 26

Please join us at our next dinner and support meeting on May 26th!

Click the flyer for details.

Excellent Video about Acute Lymphoblastic Leukemia

Do you ever tire of explaining ALL to friends and family? It's complicated!
This video, done by the Hospital for Sick Kids and Candlelighters Canada, does a great job explaining the diagnosis and treatment of acute lymphoblastic leukemia.

KPhiG's C.A.R.E. Week Photos

Check out some of the highlights from this evening's Mr. CARE Week Pageant! Check back for more photos soon. DJ Incredible from 99.3 was fantastic. Great job KPhiG ~ and special thanks to the guys for making the evening so much fun too!

Marrow Drive - Diverse Patients Need Donors!

MEDIA ADVISORY
For Tuesday April 21, 2009

National Institutes of Health (NIH) Marrow Donor Event
Event Raises Awareness about the Need for More Black and African American Marrow Donors

WHAT: Prince George’s County residents can take the first step to save a life by joining the Be The Match RegistrySM between 3 p.m. and 6 p.m. on Tuesday, April 21, 2009 at Prince George’s Community College (PGCC) Largo Student Center, Community Rooms A & B, by simply swabbing their cheeks.

The NIH Marrow Donor Program, along with the Nursing Program of Prince George’s Community College (PGCC), is holding the marrow drive in the hopes of raising local awareness about the dire need for donors to join the Be The Match RegistrySM. Donors with diverse racial or ethnic backgrounds are especially critical, as patients in need of a transplant are most likely to match someone of their own race and ethnicity. The event is open to all.


WHEN: Tuesday, April 21, 2009 WHERE: Prince George’s Community College
3:00 p.m. – 6:00 p.m. Largo Student Center, Community Rms A&B
301 Largo Road
Largo, MD 20774
(301) 322.0400
SPECIAL FEATURE: 93.9 WKYS radio will attend with DJ Antonio who will have giveaways and offer live call-ins to the radio station.
PHOTO/INTERVIEW OPPORTUNITIES:
· Recipient Dwayne, 20, Maryland: Diagnosed with aplastic anemia while living in his native Jamaica, he traveled to the NIH, where he received his marrow transplant approximately 18 months ago. He is very excited about the opportunity to speak at the PGCC donor drive.
· Donor Garrett Stackman, Silver Spring, MD: Stackman, an attorney and NIH donor, joined the Registry when a colleague of his wife’s was searching for a marrow match. Almost two years ago he donated his cells to a man who was in the fight of his life; the two met for the first time this past October. Stackman, who considers this one of the more important things he’ll do in his life, is eager to share his donation experience.
· WKYS Radio Station, Antonio "The Cuban Cigar Smoker": WKYS is partnering with the NIH Marrow Donor Program and PGCC to encourage local residents to come learn more about marrow donation, the need for diverse donors, and to join the Registry.
· Maryland Delegates


WHY: For thousands of patients with life-threatening diseases such as leukemia and lymphoma, a marrow transplant from an unrelated donor is their best or only hope for a cure. These patients depend on the Be The Match RegistrySM to find a match – and a second chance at life. While many patients do find the life-saving match they need each year, more donors are needed to help increase the likelihood that all patients will find a life-saving match.


About the National Marrow Donor Program® (NMDP) and Be The Match
The NMDP operates the Be The Match RegistrySM and partners with a global network of leading hospitals,
blood centers, cord blood banks, laboratories and recruiters. As a leader in the field of marrow and cord
blood transplantation, the NMDP facilitates transplants worldwide, conducts research to improve survival and
quality of life, and provides education to health care professionals and patients. Since it began operations in
1987, the NMDP has provided more than 35,000 transplants to help give patients a second chance at life.
For more information, visit www.BeTheMatch.org or call 1 (800) MARROW-2.

CONTACT: Gina L. Boyd, The NIH Marrow Donor Program, Cell: 202.345.5412, Office: 301.496.0572 , Email: boydg@cc.nih.gov


Meghann Long
Recruiting Assistant
NIH Marrow Donor Program
6011 Executive Blvd
Rockville, MD 20852
301-496-0572

May 16th St. Baldricks ~ Ri Ra's Irish Pub 12:00pm

We wanted to let you know about another opportunity to participate in St. Baldricks!

This event will have a silent auction, raffle and of course a whole lot of head shaving. This is a kid friendly event and will include activities for all children that attend.

Ri Ra Irish Pub
4930 Elm Street
Bethesda, MD 20814

St. Baldricks is the worlds largest fund-raising event for childhood cancer research. Last year St. B’s raised over $50 million dollars! This is a head shaving event, people (men, women and children) volunteer to shave their heads in order to raise funds for children with cancer.

The organizers of this St. Baldrick's event, Andrea,Adrienne and Tiffany, are pediatric nurses that now or at one time worked with oncology children. Last year they raised $37,000!

Here is a link to the event:
Ri Ra St. Baldrick's

Parent Night ~ Late Effects

Many parents find going off treatment particularly stressful. After all, we've been on a mission each and every day of our child's treatment. When that is over, we may feel as if the security blanket of "doing something" has been taken away.

We hope you'll join us on April 29th for pizza, kids activity and our special guest, Dr. Jennifer Dean. We hope to see you on the 29th! Click on the flyer to enlarge. RSVP to DCCandlelighters@gmail.com or Connie Connor.



This event is co-sponsored by DC Candlelighters.

Neuroblastoma Finding - COG Statement

Children's Oncology Group (COG) has issued a statement regarding findings that will change their neuroblastoma protocols. Read it here: COG Statement 3/19/2009

CARE Week ~ Save the Date!

C.A.R.E. Week - Cancer Awareness: a Real Effort
This event by the Kappa Phi Gamma sorority of George Mason University will promote awareness of childhood cancer and raise funds for DC Candlelighters!

We hope you can come out and participate!

Targeted Therapy for Childhood Cancers - A Day-Long Symposium

On April 17, 2009, there will be a day-long symposium at Georgetown University Medical Center ~ for Care Givers, Advocates and Medical professionals on "Targeted Therapy for Childhood Cancers."

Georgetown University Medical Center - Research Building Auditorium

Keynote Address by Peter Houghton, PhD, of St. Jude Children's Research Hospital

Topics include neuro-oncology, hematology, and sarcomas.



Information and registration: http://lombardi.georgetown.edu/events/pedstherapy

Free Teleconference from Beyond the Cure

Thursday, May 21, 2009 1:30 p.m. CT

The Financial Impact of Treatment When a Child is Diagnosed with Cancer
Presenters: Debra J. Wolf, Esq., Senior Attorney Legal Health, New York Legal Assistance Group and Tami Lewis, RN, CCM, Senior Clinical Case Manager, Patient Advocate Foundation

Goal: It is impossible to be prepared for the financial impact that occurs when a child is diagnosed with cancer. During this teleconference, hear how the treatment of childhood cancer affects finances and identify ways to manage and distribute available assets.

Deadline to register for this teleconference: Monday, May 11, 2009.

Childhood Cancer Survivor Scholarships

Beyond the Cure is offering eight $1000 scholarships to childhood cancer survivors. The deadline for applications is May 1, 2009. "College-bound or enrolled childhood cancer survivors who have illustrated the ability to overcome the difficult challenges of cancer with determination and motivation are encouraged to apply. Some of these scholarships will have a localized geographic focus. The N.C.C.S. has limited resources available and a limited number of applications will be approved."

For more information, go to Beyond the Cure and click on General BTC Scholarships.

Helping Survivors of Childhood Cancer Quit Smoking

While many of us can't imagine that our child, a survivor of pediatric cancer, would ever do something as harmful as smoking cigarettes, studies have shown they are almost as likely to smoke as the general population.

The National Cancer Institute's bulletin yesterday featured a clinical trial headed by Dr. Robert C. Klesges of St. Jude Children’s Research Hospital: Efficacy of Tobacco Quitline for Childhood Cancer Survivors (XPD07-140).

For Parents, Caregivers and Professionals: Helping Brothers and Sisters of Children Living with Cancer

Telephone Conference Sponsored by Cancer Care

Telephone Education Workshop Details

Topic: Emotional Concerns Cancer

Date: May 14, 2009
Time: 1:30 p.m. - 2:30 p.m. ET

Presented By: Melanie Goldish
Executive Director, SuperSibs!

Deborah Bond Berk
MSW, Senior Social Worker, Sibling Program Coordinator, Dana-Farber Cancer Institute, Division of Pediatric Psychosocial Oncology

Lori Wiener
PhD, Director, Psychosocial Support and Research Program, Pediatric Oncology Branch, National Cancer Insitute/NIH

Michael D. Amylon
MD, Emeritus Professor of Pediatrics, Stanford University School of Medicine, Division of Stem Cell Transplantation, Lucile Packard Children's Hospital Medical Director, Camp Okizu

Julia Little
MSW, Project Coordinator, CancerCare for Kids

Sign Up for Conference

Request for Nominations: Family Members of Bone Marrow Transplant and Cord Blood Transplant Recipients

The following notice was received from the National Cancer Institute:

Request for Nominations – Patient Representatives Needed for the Advisory Council on Blood Stem Cell Transplantation – Nomination submission until April 8, 2009

The Advisory Council advises the Secretary and the Administrator, HRSA, on matters related to the activities of the C.W. Bill Young Cell Transplantation Program and the National Cord Blood Inventory Program. Specifically, HRSA is requesting nominations for voting members of the Advisory Council on Stem Cell Transplantation in these categories [additional categories listed in the notice above]: family members of bone marrow transplant and cord blood transplant recipients or family members of a patient who has requested assistance by the Program in searching for an unrelated donor; and members of the general public. Nominees will be invited to serve a 2- to 6-year term beginning after January 1, 2010.

Interested individuals should submit a nomination package to the Executive Secretary, Advisory Council on Blood Stem Cell Transplantation, Healthcare Systems Bureau, HRSA, Parklawn Building, Room 12-105, 5600 Fishers Lane, Rockville, Maryland 20857 by April 8, 2009.

For more information: Federal Register Notice

Virginia Childhood Cancer Awareness License Plate

Tom and Joanne Kral of Chesapeake, VA are leading a new effort to bring childhood cancer awareness license plates to Virginia. Tom and Joanne started Help Cancer Kids, to honor their 7 year old daughter Kristina, who died on Thanksgiving Day 2006.

Several years ago another mom, Rhonda Jarvis of Waynesboro, VA led an effort for VA license plates with a gold ribbon for childhood cancer. Later, CureSearch picked it up to help spread the word. Sadly, neither was able to generate enough interest for DMV to make the plate.

Who knows? Hopefully this will be the year!

Virginia DMV has agreed to design a special license plate for Childhood Cancer Awareness after 350 or more prepaid applications have been collected by the foundation.
Purchase your Childhood Cancer Awareness license plate through their website for $25, plus PayPal fee. After 1,000 plates are sold, Virginia DMV will donate a portion of the proceeds to Childhood Cancer Awareness Foundation.



Click here to read more: Help Cancer Kids


Please pass this information on to help the effort!

Angel Kisses 5K Run/2K Fun Run and Walk

Come join us for the 6th Annual Angel Kisses 5K Run/2K Fun Run and Walk

Mother's Day ~ Sunday, May 10th @ 8:00 am

Location: Poplar Tree Estates Swim & Tennis Club
13516 Point Pleasant Dr., Chantilly, VA 20151

About Our Race
This race was created in honor of a special little boy, Jeffrey Virostek, who lost his brave battle with leukemia on September 25, 2003, at the age of 4 1/2. Angel Kisses is a fund-raising 5K/2K Race to benefit the Jeffrey Virostek Fund, a component fund of the Northern Virginia Community Foundation.



To date, the Angel Kisses 5K has contributed over $75,000 to the Jeffrey Virostek Memorial Fund. These funds have helped families directly through contributions to Special Love, Inc., Big Apple Clown Care Unit, INOVA Life with Cancer, DC Candlelighters, Give Kids the World, Super Sibs, Candlelighters Childhood Cancer Foundation, and Colors of Love.

For more information, please visit: http://www.angelkisses-5k.org/

FREE Bone Marrow Drive

Have you ever wanted to register as a marrow donor but either haven't taken the time or gone to the expense? Like me, you may have put it off til your life settled down. I finally did register a few years ago, and although I have not yet been a match for anyone, I look forward to being a donor one day. The test was an easy cheek swab - painless!

I received information about an opportunity to register free of charge AND get a free health screening! Marc Gold is a 25 year old with an agressive form of leukemia. He desperately needs to find a donor.

Even if you don't match Marc, you will be placed on the marrow registry and may one day have the chance to save a life -- someone's child, mother, father, brother or sister. Since the flyer may be hard to read, here is the info:

His family is seeking ONE person
YOU could be the ONE

March 22, 2009
10 - 1pm Jewish Community Center of Greater Washington - Free Health Fair & Bone Marrow Drive, 6125 Montrose Road, Rockville, MD 20852

http://www.jccgw.org/

1-4 pm Precision Health & Fitness - Bone Marrow Donor Drive, 6500 Rockledge Drive, Bethesda, MD 20814 http://precisionhealthandfitness.com

Support Group Meeting - March 18th

Parents - are you feeling overwhelmed, stressed, worried, alone? You are NOT alone! Meet, share and learn from others who have “been there.”

Please join us for a support group meeting on Wednesday, March 18th from 6:30 - 8:30 pm at the Life with Cancer Family Center. Parents, grandparents and caregivers of children in treatment or off treatment, survivors and professionals are welcome to attend.

A pizza dinner will be served.

We regret that we will be unable to provide a children's activity or child care during this meeting, but we do hope that you'll be able to come!

Please RSVP to Lisa Tignor (703-590-4134) or Connie Connor (703-531-1515), or email dccandlelighters@gmail.com.

St. Baldrick’s!

Come shave your head and support St. Baldrick’s!

Date: March 15, 2009
Time: 3:00 pm - 6:00 pm
Place: Fast Eddie's in Centreville, Route 29
RSVP: meglawless@cox.net

For more information about St. Baldrick’s, click here: St. Baldrick's Foundation - Shaving the Way to Conquer Kid's Cancer

Rachel's Tea Party and Fashion Show

We are pleased to invite Candlelighters families to the 6th annual Rachel's Tea Party. This year's party has been expanded to include a fashion show and opportunity for Girl Scouts to earn badges!



Admission is FREE for pediatric oncology families. Please click on the invitation below for the full-size flyer.

Tainted Peanut Products Pose Special Concerns for Cancer Patients

Read the National Cancer Institute's Fact Sheet on Peanut Product Recall and Cancer Patients, and a complete list of recalled peanut butter and other peanut-containing products available on the FDA's Web site.

Hospital & Clinic Visits ~ AKA Caregiver Teas

We normally visit area hospitals and clinics serving pediatric oncology families on the following schedule, offering Panera Bread, coffee, tea, resources and support to caregivers. This schedule is subject to change.



1st Thursday of each month (10am - 12pm) ~ Inova Fairfax Hospital



3rd Wednesday of each month (11am - 1pm) ~ Georgetown Hospital

3rd Thursday of each month (11am - 1pm) ~ Fairfax CNMC outpatient clinic

3rd Thursday of each month (11am - 1pm) ~ CNMC Hospital

Super Sibling Support and Kids with Cancer Days

Reminder - February 16th - sponsored by Life With Cancer but open to all DC area families battling cancer, regardless of treatment facility.

Super Sibling Support and Kids with Cancer Days
10 - 4 pm at the Life with Cancer Family Center, near Inova Fairfax Hospital.
Lunch provided.
For kids and sibs ages 5-12.
Games, crafts, medical play.

RSVP to Jenny Eckert, LCSW, 703-698-2536 or Jennifer.Eckert@inova.org.

Mammography rates low among childhood cancer survivors who underwent chest radiation

The following article stresses how important it is for our young adult female survivors who received radiation to get mammograms.

Mammography rates low among childhood cancer survivors who underwent chest radiation

Speaking of testing recommendations for late effects, this might be a good time to post these articles and guidelines:

Pediatric Cancer Survivors Need Long Term Follow-Up

Late Effects of Treatment for Childhood Cancer (PDQ®)

COG Survivorship Guidelines

While not designed to replace the clinical judgment of physicians, the guidelines provide recommendations for screening and management of late effects that may arise in pediatric cancer survivors years after their chemotherapy, radiation or surgical treatments. The guidelines are intended to establish national standards to help physicians promote healthy lifestyles among these patients, provide for ongoing monitoring of their health, facilitate early identification of late effects of therapy and provide timely medical care for those late effects.

According to Melissa M. Hudson, M.D., member of St. Jude Hematology-Oncology and director of the St. Jude After Completion of Therapy (ACT) clinic, an estimated 270,000 survivors of childhood cancer live in the United States and an estimated one in 570 young adults age 20 to 34 is a childhood cancer survivor.

Naomi's Hope a miracle

Naomi Bartley is the 28 year old daughter of our own Ruth Hoffman, Executive Director of Candlelighters national office. Naomi is a survivor of AML and endured a bone marrow transplant over 20 years ago.

This is the amazing and inspirational story of HOPE.

February Parent Night/Support Group Meeting

We hope you can join us!

Life with Cancer, DC Candlelighters & The Leukemia and
Lymphoma Society

Welcome Pediatric Oncology Parents to:

A Night of Information and Support*

Featuring: "Art Therapy"

Wednesday, February 11th, 2009
6 - 8:30 pm

At the new
Life with Cancer Family Center
8411 Pennell Street, Fairfax VA 22031

Jean McCaw, Art Therapist, with Life with Cancer and Tracy’s Kids,
will describe the nature and benefits of art therapy for children and
adults during cancer treatment and lead parents in an art experience.

Candlelighter’s Parents will lead a discussion after the presentation.

*A separate activity group will be held for
children with cancer and their siblings, ages 5 - 12.

Pizza dinner for all.

Please RSVP to Connie Connor, LCSW
Pediatric Oncology Counselor, 703-531-1515.

2009 Dates to Remember

The following are offered by Life With Cancer. All programs are FREE and open to all families affected by cancer.

• Pediatric Oncology Parent Night (Wednesdays ~ February 11, March 11, April 29, June 4) 6- 8:30 pm. Pizza Dinner provided. Simultaneous Kids with Cancer and Sibling Craft Group, ages 5-12. Life with Cancer Family Center, topics vary each month. Co-sponsored by DC Candlelighters and Leukemia and Lymphoma Society. RSVP to Connie Connor, LCSW, 703-531-1515 or constance.connor@inova.org.
  




• Super Sibling Support and Kids with Cancer Days (Mondays ~ January 26, February 16 and April 6). 10 - 4 pm at the Life with Cancer Family Center, near Inova Fairfax Hospital. Lunch provided. For kids and sibs ages 5-12. Games, crafts, medical play. RSVP to Jenny Eckert, LCSW, 703-698-2536 or Jennifer.Eckert@inova.org.




• Art Expression for Teens (Wednesdays ~ January 28, February 25, March 25, April 22). 6:30 - 8:30 pm at the Life with Cancer Family Center, Dinner provided. For any teen affected by cancer. RSVP to Jenny Eckert, LCSW, 703-698-2536 or Jennifer.Eckert@inova.org.




• Movie Night for Teens with Cancer (Wednesday ~ future date to be determined) 6:30 - 9 pm. Life with Cancer Family Center, Dinner provided. For any teen affected by cancer. RSVP to Jenny Eckert, LCSW, 703-698-2536 or Jennifer.Eckert@inova.org.

H.R. 653, The National Childhood Brain Tumor Prevention Network Act of 2009

On January 24th U.S. Senators Charles E. Schumer (D-NY) and David Vitter (R-LA) introduced legislation in the Senate that would require the National Cancer Institute at the National Institutes of Health (NIH) to establish a National Childhood Brain Tumor Prevention Network. Congresswoman Barbara Lee (D-CA) reintroduced the legislation in the House (first introduced September 26, 2008 as HR 7153 .



The new network is expected to conduct research, provide grants, and issue guidance and recommendations toward preventing and curing pediatric brain cancers. You can read the bill here: H.R. 653.



According to the National Cancer Institute (NCI), brain tumors are the third most common type of childhood cancer, after leukemia and lymphoma. Unlike leukemia and lymphoma, childhood brain tumors do not have the same favorable prognosis. Each year, approximately 2,200 children and adolescents are diagnosed with malignant central nervous system tumors, over 90 percent of which are located within the brain. Children diagnosed with malignant brain tumors have only a 60 percent survival rate. Those that do survive have long-term health problems due to the invasiveness of brain tumors and treatment.

More on the IKAROS Findings

The National Cancer Institute posted this Special Report yesterday, following up on the childhood leukemia findings reported last week:



Genome Studies Yield Insights into Childhood Leukemia

Volunteer Orientation

*Volunteer Orientation*

The DC Chapter of the Candlelighters Childhood Cancer
Foundation will hold an orientation program for anyone
interested in becoming a volunteer on

Saturday, January 24, 2008
9:30 a.m. – 2:00 pm
***
Long & Foster Building
Route 28 (across from the Multiplex Cinema)
Centreville, VA
***
We are looking for volunteers to help with these projects - particularly "seasoned" parents who can provide valuable support by speaking with families in treatment.

The orientation will provide volunteers with an in-depth knowledge of our programs and services, communication skills, information on family issues, coping skills for volunteers and confidentiality issues.

Come find out what we're all about!

No prior experience necessary

Complimentary breakfast and lunch provided
***
Please RSVP no later than Tuesday, January 20th if you plan to attend so that we can provide adequate food and handouts.

Email: dccandlelighters@gmail.com
Or phone: Lisa Tignor (703-216-8301) or Meg Crossett (703-795-3340)

News Articles and Free Teleconference

Scientists have identified mutations in a gene that predict a high likelihood of relapse in children with acute lymphoblastic leukemia (ALL): Gene Abnormality Found to Predict Childhood Cancer Relapse.

This is a very early but very exciting discovery. Details will be in the New England Journal of Medicine next week. More information can be found at:

NEJM editorial: http://content.nejm.org/cgi/content/full/NEJMe0809819v1

NEJM article: http://content.nejm.org/cgi/reprint/NEJMoa0808253.pdf

NCI TARGET news release:
http://www.cancer.gov/newscenter/pressreleases/ALLTARGET

What is TARGET? http://target.cancer.gov/about/

Today a teleconference was held on these new findings on pediatric high-risk Acute Lymphoblastic Leukemia (ALL). Brief presentations from principal investigators from NCI, St. Jude Children’s Research Hospital, and the Children’s Oncology Group, followed by an open question and answer session.


Toll-Free Playback is available through February 9, 2009 at 1-866-357-4215.



Last month the NCI released a snapshot of the incidence of pediatric cancers: Pediatric Cancer Snapshot



Yesterday, Science Daily had an article about the causes of neuroblastoma: New Insight into Agressive Childhood Cancer



During the month of December, Candlelighters again displayed the Gold Ribbon Holiday Awareness Tree. The Washington Post did an article on the help provided by St. John's Episcopal School: St. John's School Helps Cancer Foundation




Finally, there is another free teleconference from Beyond the Cure that may be of interest:

Free teleconference sponsored by The National Children's Cancer Society:

Title: Late Effects of Childhood Cancer: Current Research and the Impact on Health

Date: Tuesday, January 20, 2009 1:30 pm - 2:30 pm Central

Presenter: Paul Nathan, M.D. MSc, FRCPC Staff Oncologist, Hospital for Sick Children, Toronto, Canada: Associate Scientist, Research Institute: Child Health EvaluativeSciences: Associate Professor of Pediatrics and Health Policy, Management and Evaluation, University of Toronto

This Teleconference will:

Identify key issues faced by survivors of childhood cancer.

Discuss strategies utilized in monitoring for late effects of cancer therapy.
Develop interventions to aid survivors in living healthy lives after cancer.
List resources available to survivors of childhood cancer.

The final 15 minutes will be open to a question and answer session.

To Register: Online registration is available at Beyond the Cure or call 1-800-FAMILY (1-800-532-6459).

Welcome to DC Candlelighters blog!

As you may already know, we are an all volunteer non-profit organization serving families battling childhood cancer in the Washington, DC metropolitan area. With limited time and money for a newsletter, this blog was born.


We hope to bring timely news articles and events to the families we serve. Please email suggestions to dccandlelighters@gmail.com.


For more information about our organization, visit http://www.dccandlelighters.org/

~ DC Candlelighters

Enhancing the lives of families and children by providing education and advocacy, emotional and practical support, and most of all... HOPE....because kids can't fight cancer alone!