June 28, 2009
June 25, 2009
Summertime
Summertime
Posted 10 hours ago
…and the livin’ is…well, not exactly easy, more like…busy. That’s a good thing. I am over the moon grateful that Evan continues to do well, three months running. He is scheduled for a big hospital visit in another two weeks.
Having the time off from the hospital has allowed him to hone his skills in such areas as:
Car Repair, Shaving, Camping, Arts and Crafts, Swimming, Negotiations With The Circus, Flying, Gymnastics, Culinary Arts, and of course, the tweaking of his ten year old skills, to wit, the Top Ten Ways To Incorrectly Slide Down a Slide and More Ways to Gyrate One’s Tongue Than You Ever Thought Possible.
I will update after the LP and visit with the doctor. Please pray especially for Madee, MT and Becka…complete healing is needed. Evan is stable and doing well, and we are thankful. We are ever cognizant that many in our extended ‘family’ could use your energies. The fight never stops.
We have some great news and some even greater news to share…soon.
Special thanks to Don, Sarah and, as always, my parents and family…for all the perfect touches you continue to paint on our canvas of needs. Thanks to all the special families that made it to DC and/or ordered a Marrow kit. Godspeed PP…may the road rise to meet ya! Looking forward to the texts from the road.
Thank you for checking in and as always, for your continued blessings and prayers. Be Well.
Kimberly and the boys~
Cancer of the Soul
And Michael Jackson...More Cancer
Posted by: Lori Hope What Helps, What Hurts, What Heals
It’s hard to believe the world lost another cultural icon today. Michael Jackson was so different from Farrah Fawcett, but he mattered just as much, or some would say even more. It depends on what you value, how old you are, and so many other factors.
But, in any event, Michael Jackson mattered, because, first, he changed the world of music and dance. You can’t turn on the radio or TV at this moment, six hours after his death, without hearing him eulogized and remembered, again and again, without hearing his music and seeing him dance in his inimitably fluid yet and impassioned way, doing the Moonwalk and Circle Slide moves he created.
Second, Michael Jackson matters because he reminds us that fame is not necessarily something to be envied or sought after. We, the public, exploit stars, invading their privacy, and even though they must certainly know that’s the price they pay for success, I can only imagine how they must feel, living in a fishbowl. Maybe a shooting gallery would be a more appropriate metaphor. Remember how he tried to shelter his children from the cameras, covering their faces with scarves and other things?
Finally, Michael Jackson matters because he reminds us that being talented and accruing enormous wealth do not buy happiness either. Jackson was a true artist, and he gave and gave and gave. We gave him our money, and some gave their obsessive attention and “love”, but as Jackson himself admitted, he was terribly lonely. And deeply disturbed.
And ultimately, he lost his fortune. Sadly, he was about to use his talent to try earn it back with his 30-date world tour.
Although Michael Jackson did not have cancer, he had a cancer of the soul. In that sense, he and Farrah may have shared more than meets the eye.
What a sad, sad day. What can help? Remembering. Allowing ourselves to grieve. Grieving together.
What can heal? Knowing that there is something to be gained, something to be learned, something to be shared from these tragic losses.
We can always hope.
With love,
Lori
June 23, 2009
Spend A Night With A Grammy Award Winner
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FRIDAY, AUGUST 14, 2009, 8:00PM AT THE ORPHEUM THEATRE Ne-Yoand the New Standardsto perform at Glamorama 2009Meet the Performers.
+ a special guest to be announced.TICKETS ON SALE NOW$75-$1000 Tickets are going fast, buy them now! CALL CHILDREN'S CANCER RESEARCH FUND AT 952-893-9355 |
June 18, 2009
God Said Ha!
Cancer Survivor's Bookshelf (recommended reading for phoenixes and the people who love them)
Sunday, I spoke at a National Cancer Survivor's Day event in Danbury CT, a beautifully organized and well-attended event that was a pure pleasure. Usually, I keynote conferences designed to educate cancer patients, families, onco nurses, social workers, and other care providers. I'm brought in as the proverbial spoonful of sugar that helps the medicine go down; after my morning message, the day is filled with endless statistical lectures, where oncologists attempt to predict the future, and scary PowerPoint pie charts, where survivors sit there willing themselves to cling to the thinning slice of "lived to tell about it." Sunday's event had just one purpose: celebrate life. We came together to relish the fact that whatever happens in the future, we're alive now, and life is beautiful. Which isn't to say that education doesn't happen. Cancer survivors and caregivers quickly learn to network more effectively than college kids planning an off-site kegger. Breakfast was humming with supportive conversation, helpful hints, lots of laughter, and enthusiastic book recommendations.
As I made my way to the coffee area, I was secretly delighted to have my own book recommended to me by no less than half a dozen people. No one ever recognizes me from the author photo, as I'm nine years older and have hair now. (That fabulous bald noggin on the front cover is gorgeous Margaret Baker.) I suppose I should be coy and proper and leave it off this list, but the truth is, I'm proud as hell of this book and gratefully astonished at how people have connected with it. If I do say so myself (and yeah, I do, or I wouldn't have put so much work into it), it's a great book for anyone going through chemo or seeking to understand that experience. It's not a book about cancer, it's a book that reminds people: cancer exists only in the context of a life. Book clubs who've embraced it over the years made me realize it's actually a book about finding joy in whatever refining fire life dishes out.The first two books I always recommend are Dr. Wendy Harpham's Diagnosis Cancer: Your Guide to the First Months of Healthy Survivorship (now in its third updated edition) and After Cancer: A Guide to Your New Life. Knowledge is power in general, and in this situation, knowledge is survival. Dr. Wendy was a young mother and an internist with a thriving private practice when she was diagnosed with non-Hodgkin's lymphoma almost 20 years ago. Her knowledge of all things cancer is unmatched, intimate, and absolutely up-to-the-minute. Her writing style is compassionate, literate, funny, and wise. These two books take all the unthinkable, terrifying crap you really must know in those first crucial years and deliver the information in an accessible Q&A format. I also direct survivors at all stages to Wendy's "On Healthy Survivorship" blog. (Check out this great post from last Friday: "Can you please shut up?" addresses the crazy-making issue of unwanted advice from the unschooled but well intentioned.)
Newsweek editor Jobathan Alter says Wendy's latest, Only 10 Seconds to Care: Help and Hope for Busy Clinicians, is "extraordinarily useful — not to mention compelling — for patients like me. She has x-ray vision that gets to the core of the doctor-patient relationship. This is a wise and insightful and deftly written book."Another great book for the newly diagnosed "cancer couple" (an apt phrase I coined just this second) is Breast Cancer Husband: How to Help Your Wife (and Yourself) during Diagnosis, Treatment and Beyond by Marc Silver. The title says it all, and it delivers.
And screw chicken soup, Julia Sweeney delivers a Harvey Wallbanger for the soul with God Said, Ha!, which she did as a one-woman show (which really really should be out on DVD.) It's not about "laughing it off", it's about embracing an experience and laughing through it.
While I have to give it a "seriously dark and heavy" warning label, I really love Joan Didion's Year of Magical Thinking. I know our blah-blah-by-yer-bootstraps culture mandates that we spackle a "positive attitude" over our actual feelings so other people don't have to be made uncomfortable by our suffering, but the darkness of a shattering experience has to be explored for the fullness of the experience to be honored. This book basically wallows in grief, acknowledges the power of loss, and then moves on. Not happily or spunkilly or with a skip in the step, but still standing -- which is a marvel. Like I said, I wouldn't suggest it for infusion days, but this stage version is drastically condensed, much easier to take, and just as powerful.
The revised What to Eat if You Have Cancer: Healing Foods that Boost Your Immune System is a great sidekick, as is Eating Well Through Cancer: Easy Recipes & Recommendations During & After Treatment.
Last but not least is the book I suggest you tuck in your bag on your way to every chemo infusion: Where the Wild Things Are, written and illustrated by Maurice Sendak. (You'll know what I mean, trust me.)
June 17, 2009
Bugs Bunny WAS Smart, Indeed!
Carrots cooked whole are better for your health
Chopping up your carrot after it has been cooked boosts its anti-cancer properties by 25 per cent, scientists at Newcastle University have found.
The study, carried out by Newcastle University’s Dr Kirsten Brandt and researcher Ahlam Rashed, found that ‘boiled-before-cut’ carrots contained 25 per cent more of the anti-cancer compound falcarinol than those that were chopped up first.
The naturally occurring sugars which are responsible for giving the carrot its distinctively sweet flavour were also found in higher concentrations in the carrot that had been cooked whole.
Presenting the work at a conference in Lille today, Dr Kirsten Brandt said this meant the ‘boiled-before-cut’ carrots not only had a higher nutritional value but also tasted better.
“Chopping up your carrots increases the surface area so more of the nutrients leach out into the water while they are being cooked,” explained Dr Brandt, based in Newcastle University’s School of Agriculture, Food and Rural Development and the Human Nutrition Research Centre.
“By cooking them whole and chopping them up afterwards you are locking in both taste and nutrients so the carrot is better for you all round.”
The study
The health benefits of falcarinol in carrots were first discovered four years ago by Dr Brandt and colleagues at Newcastle University and the University of Southern Denmark.
The team showed that rats being fed on a diet containing carrots or on isolated falcarinol were a third less likely to develop full-scale tumours than those in a control group.
These early experiments were carried out on raw carrots and since then the Newcastle University team has been investigating whether certain types of carrots are better than others and what the effects of cooking are on the compound.
These latest findings show that when carrots are heated, the composition changes. The heat kills the cells, so they lose the ability to hold on to the water inside them, increasing the concentration of falcarinol as the carrots lose water.
However, the heat also softens the cell walls, allowing water-soluble compounds such as sugar and vitamin C to be lost via the surface of the tissue and resulting in the leaching out of other compounds such as falcarinol. Since the carrot loses water and sugar, the weight per carrot is also reduced.
If the carrot is cut before being boiled, the surface area becomes much greater and so also the loss of nutrients and taste compared with one that is whole when it is boiled.
The team also carried out a blind taste test on almost 100 people comparing the taste of ‘boiled-before-cut’ versus ‘cut-before-boiled’ carrots. The response was overwhelming with more than 80 per cent saying that carrots cooked whole tasted much better.
Dr Brandt added: “We all want to try to improve our health and diet by getting the right nutrients and eating our five-a-day. The great thing about this is it’s a simple way for people to increase their uptake of a compound we know is good for you, all you need is a bigger saucepan.”
June 16, 2009
CURESEARCH HAPPENINGS
June is REACH the Day month at CureSearch. We have been busy planning the event and scheduling hundreds of visits in Congressional offices. If you are not able to join us in Washington this year for Reach the Day, you can still be there in spirit.
- We have created a special Reach the Day gift shop where you will find a full range of products. You can dress yourself, your babies and your pets in a Reach the Day T-shirt; you can enjoy your morning coffee from a new mug, or wear a Reach the Day baseball cap. These and many other items can be found in our new gift shop.
Call your elected officials on Monday June 22 to let them know that more than 400 representatives of the childhood cancer community, parents, children with cancer, health care providers will be on Capitol Hill to advocate for funding for childhood cancer research. Let them know why this is an important issue for you. Go to: http://capwiz.com/curesearch/dbq/officials/?lvl=L to look up your elected officials.
In addition to Reach the Day we have also been planning for September Childhood Cancer Awareness month. This year September 12, 2009 will be declared Childhood Cancer Awareness Day by Congressional Resolution. The designation of September as Childhood Cancer Awareness Month started with a Presidential Proclamation in 1990 by then President George Bush, Sr. For several years following, there were Congressional Resolutions designating September as Childhood Cancer Awareness Month. Today, September has been claimed by the childhood cancer community as our own. 2009 is the second year Congress will be designating a specific Childhood Cancer Awareness Day by introducing House and Senate Resolutions. In coming years, the childhood cancer community can come together to claim a day.
CureSearch Happenings in September Get Ready. Get Set. Go! Stay tuned for the CureSearch Virtual Walk – Season 2.
CureSearch Awareness Campaign: Have you seen our TV spots? Our 30 second spot is now airing across the country. Let us know if you see it or have contacts at your local TV station. You can help us. Are you traveling his summer? Look for our CureSearch poster hanging in airports across the country. Send us your photo next to our poster and we’ll post it on our site.
The MileStones Walk to Conquer Kids’ Cancer is sweeping the nation this summer and fall. We invite you to join us in Denver, Wilmington, Washington, DC, Chicago, Des Moines, Portage, MI, Charlotte, Cleveland, Austin and Norfolk. If you live in the Washington, DC area, we’re looking for volunteers for the first – ever CureSearch MileStones walk in our nation’s capitol. Contact: info@curesearch.org.
Young Artist Program – Artwork Needed!
Our Young Artists help to create awareness and raise funds for research by sending us their masterpieces throughout the year. We are looking for new art! We’re excited about our new Gift Shop items. Check it out to see how we use this very special art to create awareness. Be careful. Once you see it – you’ll just have to buy something! Thank you.
Our Facebook Cause is growing daily. We have over 6,000 members. Join at: http://apps.facebook.com/causes/1152?m=3124eff7.
Register online for our eNewsletter for up to date information about all CureSearch activities. Visit http://www.curesearch.org and enter your email address in the box on the left-hand side.
June 12, 2009
MARROWTHON CHEEK SWAB Q and A's
Step 1. Confirm you meet basic registry guidelines
Please check the boxes below to confirm you meet Be The Match Registry guidelines. You need to meet all the guidelines and check all the boxes to go on to the next step.
Still Have Questions?
See FAQs about Joining the Registry or call us at 1 (800) MARROW-2 (1-800-627-7692).
Be The Match
I am consistently amazed at the power of one small Warrior Boy to impact a community and teach them about the world of childhood cancer. It seems a great task to deal with the ravages of the illness and educate as well, but rather than grow weaker with the burden, Evan seems to be thriving. Words like acute lymphoblastic leukemia and neuroblastoma are standard fare in conversations with my son. While the soul of a child is never about illness, this post today is about childhood illness and all you can do in the fight to end this war.
What troubles me about Evan knowing and using such large mouthfuls of words is that the particular phrases and deeds that call attention to one of our country’s greatest tasks, namely curing childhood cancer, are the words of a child and countless parents suffering alongside their children. The gold ribbons that bring awareness are made by cancer moms and the orange and gray wristbands are too often worn by brothers and sisters who have lost their sibling or are watching them fight.
The main focus of the war on childhood cancer and its cure is found on hastily written messages on cut up poster boards at rainy GMA Lionel Ritchie concerts-carried by cancer warriors, but on only one commercial product. Kids across the nation hold car washes and candy drives and recycle for their warriors. The families and the cancer patients themselves wear walking billboards on their t-shirts, screaming for the funding for research. Sick kids moms are designing logos. We read about childhood cancer in the Young Authors Day books of children, but hear very little about it on the evening news. How is it that the knowledge and the awareness needed for the cures for thousands upon thousands of children are in cups of lemonade sold by a four year old that battled the disease?
What seemingly is one of our country’s greatest tasks, namely the raising of our kids and consequently the cure for deadly childhood disease, takes a backseat to swine flu and Spector trials and the fallen budgets of our states. Our children are our best bet and it behooves me as the parent of a talented and special child with cancer, and the overseer of his friends in the beds beside him to remind each of us that there IS something more that we can do to help Evan and all the cancer warriors like him, who strive every day for their own cure and what’s more, THE CURE for all of the very real children battling this horrific disease process.
Typically, I leave my soapbox postings on what YOU can do, and on the fallen NOT so few, on Evan’s (other) Website but from time to time it behooves me to direct your attention to the many things we need to aid our warriors. Please bear with me as this is one posting that is near and dear to my heart and it is for ALL the kids.
There are some significant events taking place during the month of June. Perhaps one of the events will spark the match. I have often in speeches pleaded with the listener to recognize that while it may only be a “dime” or a “shirt”, to recognize that it only takes one…to tip the scales in favor of a cure…and yours might be just the one dime or shirt that sends us well on our way.
Please consider, especially during the month of June, when it is free, having your cheek swabbed. You can save a life. Yes, you literally can save a life. Join the MARROWTHON. From June 8th(NOW) thru the 22ond, the price is FREE. Thousands of patients hope for a bone marrow donor who can make their life-saving transplant possible. They depend on people like you. Take the first step today. The test is normally $100. For the MARROWTHON, it is free and involves nothing more than a cheek swab. Won't you help?
Another very “live” thing that you can do is donate blood and platelets. Even today my son teeters on the edge of low platelets. They are ALWAYS in short supply. Visit your local hospital or a cancer center near you.
Email Evan at evanthewarrior@sbcglobal.net to order an Evan The Warrior wristband or tee shirt and wear it. Tell people every chance you get why you are wearing it. I know that gray and orange bands and gold ribbons don’t match everything you wear…wear them anyway. Please consider wearing a Gold Ribbon proudly. They are free. Please visit fellow cancer moms, at www.rallyroundthegoldribbon.org and support the cure for our kids.
Have you joined People Against Childhood Cancer yet? Have you signed and spread the Petition Against Childhood Cancer yet?
CureSearch REACH THE DAY 2009 is coming-it will be the ninth annual gathering of the childhood cancer community in Washington, DC. on June 22-23, 2009. The event provides an opportunity for those who care about children with cancer, to share their story with our nation’s leaders, and to impress upon them that critical funding for childhood cancer research is needed. We come together in one place on one day to raise our voices for all children with cancer and for those who no longer have a voice.
The original gathering in Washington brought together a small group of parents who provided testimony to members of Congress about childhood cancer. At that time, many members of Congress and their staff were unaware that children even got cancer nor did they know that cancer was then and today, remains the number one cause of death from disease in children. Since that time, the childhood cancer community has been mobilized to make a difference in Congress. Since 2003, the voices and stories of families whose lives have been forever changed by having a child diagnosed with cancer have resulted in more than $12 million in Congressional appropriations to support the research of the Children’s Oncology Group.In 2008, we celebrated the passage of The Caroline Pryce Walker Conquer Childhood Cancer Act, landmark legislation that holds the promise of $30 million dedicated to childhood cancer research. We have come a great distance but we won’t stop – not until every child with cancer can be guaranteed a cure.
REACH THE DAY 2009 is our opportunity to make sure that this bill gets fully funded and that childhood cancer research continues to receive Congressional appropriations. Together, our voices are loud and strong.
We speak for the 12,500 children who will be diagnosed with cancer this year, and all who will be in the years to come. We speak for the more than a quarter of a million children in the United States who are now living with cancer, many of whom suffer from long-term, side-effects of their therapies because we have not yet found better ways to cure them. And most of all, we speak for all those children who live forever in our hearts. It is for them that we must dedicate ourselves to Conquer Childhood Cancer. Take Action. Get Involved. Please join us for Reach the Day. Questions? Contact us at reachtheday@curesearch.org, or go to www.curesearch.org
The impact of Evan’s Carepage family, his doctors, nurses, lawyers, teachers, executives, sheriff, scouts and their leaders, coupled with survivors-the powerful men, women and children that faithfully support our cancer warriors on these and other carepages can and should and WILL make a difference. If each of you that read Evan’s carepage contacted just 10 more people, with the information above, we would reach 10,000 people with just one posting! Imagine that! Evan’s impact in this worthy endeavor can be tremendous! Please visit www.evanthewarrior.com to read about the amazing efforts underway in Washington later this month to REACH THE DAY! Thousands will be descending on our Capital to raise awareness. Mark your calendars for September-CHILDHOOD CANCER AWARENESS MONTH. Plan to wear yellow on the first day of school and honor the children. Eat Fla-vor-Ice all summer and write the company thanking them for being the FIRST to endorse childhood cancer on a product, much like the pink ribbons on products we use every day. Every dime helps. All this can be found on www.evanthewarrior.com. (links broken tonight ;-()
Let’s share the load. Let’s not loose anymore cancer and chemo warriors than we have to. Simple tasks, made simpler with your help. Thank you for all you do! Special prayers to POP and fond HIGH FIVES to Baby Jack and Roman for your good news. The biggest prayers you have need to be sent up for Trey, a little boy undergoing a clinical trial in his HUGE fight against neuroblastoma. Our deepest sympathy to Corey’s parents and Mimi and family, along with Coleman's-just SOME families missing their children. Thanks to Madee and LRB-for your special message for Evan and for you, Madee, all the prayers in the world for your recovery, dear girl.
No parent should have to see an empty preschool desk chair and momentos of their child’s funeral on their kindergarten desk. Brothers should run Thomas trains on sidewalks and tables, not the etchings in a cemetery gravestone. Graduation is a time of beginnings, not endings. My heart breaks for all those, far too many, far too early, who have lost loved ones. Continued prayers as well and as strongly, for all the special children who Fight On.
Quick newsflashes and a brief slideshow, as I jump off the bandstand.
Clinic went well for Evan this week. Chemo is back to 100% levels. School’s out for summer-thank you Highlands and especially, the dear and talented teacher and ‘friend’, Mr. Ron Bonja. Godspeed Mr. Groch-you definitely win the first ever Evan the Warrior Zest for Life Award.
The 10th B-day party was the “best ever”(thanks BT & family). Special thanks also to Gill H. and Kingston Elementary School and the ETW Committee, to Kayla for her very special book and to the Scouts for the Dunk Tank. Please go eat Red Brick Pizza locally and thank them-again- for their amazing support of Evan. To AQMS Moving and Storage-thank you –truckloads- for your generous service all year. Harley-bones and beefy biscuits! Gina and family-forever grateful,and to the families of Highlands, who share bottles and cans and to the Hare Family-you will be SORELY missed. And finally to the Tobon family-you epitomize ‘loving thy neighbor as thyself' and we are forever indebted.
Thank you for checking in on our boy.
It takes a village.
Be Well.
K and ETW
One Man's Journey
After running 63 marathons in 63 days for A-T, ONE MAN will address pediatric cancer, in Strides Across Texas. One man, one journey. This man is a dynamo!
His feat of 63 marathons in 63 days is now a movie
2:02 PM, June 9, 2009
For most people, a marathon or triathlon or even an ultra race is the pinnacle of physical accomplishments. But not for Tim Borland. He wasn’t satisfied with one or two marathons, or even four or five. Or 20.
In fall 2007 the then-31-year-old from Los Gatos ran 63 consecutive marathons in 63 days, an almost unfathomable triumph. The feat was made into a movie, aptly titled, "Feat," which is slated for a couple of film festivals as producers seek distribution.
"Feat" tells the story of Borland, who ran 14,000 miles in 29 states (and part of Canada) to raise awareness for ataxia-telangiectasia, a rare childhood disease with which a friend's daughter had been diagnosed. For this A-T CureTour, Borland ran while pushing a stroller either occupied by a child wtih A-T or a with sign bearing the name of a child who had died from the disease. The movie also follows three families with children going through various stages of A-T.
Borland was included in a story we did in September 2007 on people who attempt monumental physical exploits to garner awareness -- and sometimes funds -- for various causes. Such exploits have a long history, but not all who attempt them achieve their goals. Many run out of money, some run out of energy, and others are derailed by in-fighting and poor planning.
A-T may not have become a household name everywhere, but Borland is happy with what he accomplished. And he did it, he says, with little physical trauma. Yes, there were some rough days in the beginning (including diarrhea), but after the fourth week it was pretty much smooth sailing.
"I never once got a blister," he says. "I never had a toenail turn black, never had any chafing. I did have some muscle cramping, and a couple of days my legs flared up." But starting at week five, he says, his times started improving.
"I felt just ... not human," he says, and laughs. "I was like a machine, able to crank these things out." Borland consumed about 8,000 calories a day and figures he went from about 18% body fat to 8%, but only dropped about 10 pounds as he added muscle.
He credits his success to a combination of being passionate about this cause, his religious faith, expert training and good genes. It makes those lame excuses most of us come up with to avoid exercise seem even more lame. But he also believes much of the increased interest in marathons and triathlons overall can be chalked up in part to people wanting to run for a cause or charity to which they feel tied: "It's amazing the inspiration they have," he says, "to get off the couch."
Borland has more amazing feats in store -- he's in the process of planning a marathon a day for 143 days in 2010 to draw attention to the plight of the world’s 143 million orphans. He wants to take this event global (stay tuned to his website for more information). In December he heads to Dallas for Strides Across Texas, a 481-mile run to raise money for pediatric cancer research.
"I feel like I was given a gift to do things like this," he says. "If I could survive the A-T CureTour in the health I did, maybe it means I have something most people don't, and maybe I can do life-changing things with it."
-- Jeannine Stein
June 11, 2009
More From A.J's Dad...
Coach's Corner - Reach The Day - CureSearch
Posted Jun 3, 2009 11:35am
I could do worse than being a newspaper for childhood cancer orgs, so....in the interest of them all....
Have you joined People Against Childhood Cancer yet? Have you signed and spread the Petition Against Childhood Cancer yet?
CureSearch REACH THE DAY 2009 will be the ninth annual gathering of the childhood cancer community in Washington, DC. on June 22-23, 2009. The event provides an opportunity for those who care about children with cancer, to share their story with our nation’s leaders, and to impress upon them that critical funding for childhood cancer research is needed. We come together in one place on one day to raise our voices for all children with cancer and for those who no longer have a voice.
The original gathering in Washington brought together a small group of parents who provided testimony to members of Congress about childhood cancer. At that time, many members of Congress and their staff were unaware that children even got cancer nor did they know that cancer was then and today, remains the number one cause of death from disease in children.
Since that time, the childhood cancer community has been mobilized to make a difference in Congress. Since 2003, the voices and stories of families whose lives have been forever changed by having a child diagnosed with cancer have resulted in more than $12 million in Congressional appropriations to support the research of the Children’s Oncology Group.
In 2008, we celebrated the passage of The Caroline Pryce Walker Conquer Childhood Cancer Act, landmark legislation that holds the promise of $30 million dedicated to childhood cancer research.
We have come a great distance but we won’t stop – not until every child with cancer can be guaranteed a cure.
REACH THE DAY 2009 is our opportunity to make sure that this bill gets fully funded and that childhood cancer research continues to receive Congressional appropriations.
Together, our voices are loud and strong.
Who should be involved?
We want to mobilize everyone who has been impacted by childhood cancer: survivors, children, parents, families, friends, health care providers, researchers, health care providers and advocates to speak for all those children who otherwise would have no voice.
We speak for the 12,500 children who will be diagnosed with cancer this year, and all who will be in the years to come.
We speak for the more than a quarter of a million children in the United States who are now living with cancer, many of whom suffer from long-term, side-effects of their therapies because we have not yet found better ways to cure them.
And most of all, we speak for all those children who live forever in our hearts.
It is for them that we must dedicate ourselves to Conquer Childhood Cancer.
Take Action. Get Involved.
Please join us for Reach the Day.
Questions? Contact us at reachtheday@curesearch.org, or go to www.curesearch.org
Fit For A King
FIT FOR A KING....
We must find a cure.
"To our little Julian , in our hearts forever and all the way to France, Papy, Mamie, Laurent, Liz and the whole family"
Nothing to add ...
June 06, 2009
June 05, 2009
THE MILLION DOLLAR BALL
WAY TO GO, ELI AND FRIENDS!
June 03, 2009
THE FIRST GOLD RIBBON PRODUCT-CALLING ALL PHOTOS!
Dear Families,
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- is helping Candlelighters Childhood Cancer Foundation support our nation’s littlest cancer patients. For those of you who can’t wait to get to the store to read the text along side the gold ribbon on the box it reads:”Jel Sert is proud to support the fight against childhood cancer through knowledge and awareness. Please visit www.candlelighters.org for more information, support and to learn how you can help provide hope for these children and their families ....because kids can't fight cancer alone! “
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 build awareness of this childhood cancer cause.
We also encourage you to check out 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: http://www.candlelighters.org/Awareness/SpeciallyMarkedProducts/tabid/500/Default.aspx
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!
Ruth
(Please forward to friends and family THANKS!)
--
Ruth I Hoffman MPH
Executive Director
Candlelighters Childhood Cancer Foundation
www.candlelighters. org
rhoffman@candlelighters.org
Cell: 202-262-9949
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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.
Candlelighters Childhood Cancer Foundation has been providing information and awareness for children and adolescents with cancer and their families since 1970, and supports cutting-edge research so that every child survives and leads a long and healthy life. Jel Sert is committed to support research funding and build awareness of childhood cancer.
Every school day, 46 children or two classrooms are diagnosed with cancer. Despite treatment successes, cancer remains the number one cause of death by disease of America's children.
Steve Modaff, Marketing Director said “We at The Jel Sert Company have been promoting healthy products for children since our founding in 1926. We are more than thrilled to enter into this partnership with Candlelighters Childhood Cancer Foundation, to honor our nation’s youngest cancer warriors, to support research, and to stress the significance of increased knowledge as a bridge to brighter futures for kids and teens with cancer.”
Candlelighters Executive Director, Ruth Hoffman agrees, “We have made tremendous strides in the fight against childhood cancer but far too many children still suffer and lose their lives to this illness. Sadly, 25% of children die within five years of their cancer diagnosis, and 2/3rds who do survive endure severe side effects from treatment, including cognitive deficits, organ failure, and secondary cancers. Together with Jel Sert’s support, we can provide hope to all children and teens diagnosed with this life-threatening disease.”
Buying Jel Sert’s specially marked Fla-Vor-Ice products is a
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A NEWSPAPER FOR CHILDREN
Coach's Corner - Reach The Day - CureSearch
I could do worse than being a newspaper for childhood cancer orgs, so....in the interest of them all....
Have you joined People Against Childhood Cancer yet?
Have you signed and spread the Petition Against Childhood Cancer yet?
CureSearch REACH THE DAY 2009 will be the ninth annual gathering of the childhood cancer community in Washington, DC. on June 22-23, 2009. The event provides an opportunity for those who care about children with cancer, to share their story with our nation’s leaders, and to impress upon them that critical funding for childhood cancer research is needed. We come together in one place on one day to raise our voices for all children with cancer and for those who no longer have a voice.
The original gathering in Washington brought together a small group of parents who provided testimony to members of Congress about childhood cancer. At that time, many members of Congress and their staff were unaware that children even got cancer nor did they know that cancer was then and today, remains the number one cause of death from disease in children.
Since that time, the childhood cancer community has been mobilized to make a difference in Congress. Since 2003, the voices and stories of families whose lives have been forever changed by having a child diagnosed with cancer have resulted in more than $12 million in Congressional appropriations to support the research of the Children’s Oncology Group.
In 2008, we celebrated the passage of The Caroline Pryce Walker Conquer Childhood Cancer Act, landmark legislation that holds the promise of $30 million dedicated to childhood cancer research.
We have come a great distance but we won’t stop – not until every child with cancer can be guaranteed a cure.
REACH THE DAY 2009 is our opportunity to make sure that this bill gets fully funded and that childhood cancer research continues to receive Congressional appropriations.
Together, our voices are loud and strong.
Who should be involved?
We want to mobilize everyone who has been impacted by childhood cancer: survivors, children, parents, families, friends, health care providers, researchers, health care providers and advocates to speak for all those children who otherwise would have no voice.
We speak for the 12,500 children who will be diagnosed with cancer this year, and all who will be in the years to come.
We speak for the more than a quarter of a million children in the United States who are now living with cancer, many of whom suffer from long-term, side-effects of their therapies because we have not yet found better ways to cure them.
And most of all, we speak for all those children who live forever in our hearts.
It is for them that we must dedicate ourselves to Conquer Childhood Cancer.
Take Action. Get Involved.
Please join us for Reach the Day.
Questions? Contact us at reachtheday@curesearch.org, or go to www.curesearch.org
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