Journey 4 A Cure

Journey 4 A Cure Preview us at www.Journey4ACure.org. Our journey began in March 2010 when Declan Carmical, was diagnosed with AT/RT, a rare form of brain, spine and kidney cancer.
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For 5 months he bravely endured a series of procedures and treatment strategies as part of a protocol which offered the best possible option for his survival. It offered us hope but no promise of a cure for Declan; sadly he lost his battle just 8 days shy of his 1st birthday. Our family fought tirelessly on behalf of Declan; however, our ability to help was compromised......there were no answers, there was no known cure and there was little hope. Our lives are forever changed and our purpose is clear. As a family, we are committed to voicing the raw truth about pediatric cancer. In this world of medical breakthroughs and new therapies, there has been little advancement in the world of pediatric cancer. Research for a cure is limited by lack of funding and without research, our children are left to fight cancer with few resources and little hope. No parent should have to hear the words “your child has cancer”, followed by the words “and there is no known or proven cure”. A cure is possible and it’s our responsibility to make it available. Throughout our journey, our resolve was strengthened by the many wonderful people who walked with us. People from all over the world connected to share the story of sweet Declan. It is with this same spirit that we hope to unite people once again to work towards a cure for Pediatric Cancer! How Can You Help? Start the conversation....

Did you know......

- Pediatric Cancer is the #2 overall killer of children in the U.S. The #1 killer is vehicle related accidents. Consider how much we as a society spend on vehicle related research (i.e. seatbelts, crash tests, car seats, booster seats, etc.). Every time we buy a vehicle we invest in this research. There is no comparable revenue stream in place for Pediatric Cancer.

- The American Cancer Society’s Annual Report shows $1 BILLION in total public support and it’s Extramural/Intramural Funding in Priority Areas shows only $4 MILLION is directed to childhood cancers. Less than half a penny of each of these dollars is directed to the #1 killing disease for kids under the age of 20.

- For children between 1-19 years, cancer is the fourth leading cause of death overall, and the leading cause of disease related death. It remains responsible for more deaths from ages 1-19 than asthma, diabetes, cystic fibrosis and AIDS COMBINED.

- Approximately 36 U.S. children and adolescents are diagnosed with cancer every single day

- 1 in every 300 children will develop cancer before the age of 20, 1 in every 5 of those children will not survive.

- National Cancer Institute’s (NCI) has a $5 billion budget, funded from taxpayer dollars, from this total ALL twelve major pediatric cancers received LESS THAN 3% of this budget.

- For every six research dollars per patient with AIDS and every one research dollar per patient with breast cancer, a child with cancer receives only 30 cents.

- It would only take $35 per American to develop a new drug/cure for each of the 12 most common pediatric subtypes and save 250,000 children/families. We welcome any suggestions, ideas, and comments at [email protected]. Join us as we journey to end childhood cancer!

Operating as usual

Still time to register.  Still time to donate!   Fun race for all, May1st!  Register and donate to Journey4ACure
04/23/2021

Still time to register. Still time to donate! Fun race for all, May1st! Register and donate to Journey4ACure

SATURDAY May 1st! Still time to register to run or donate!

Spring is in the air and we desperately need your support! Please sign up for Run the greenway today! Lots of options for supporting childhood cancer, for having fun too! Please sign up today and ask your friends to sign up too!

https://runsignup.com/Race/VA/Dulles/RunTheGreenway

This year is hard, maybe it's seeing babies like Francesca (Andrew Kaczynski) waging war against AT/RT with treatments n...
04/23/2021
Tiniest Cancer Immunotherapy Trial Participant Thrives Six Years Later | On the Pulse

This year is hard, maybe it's seeing babies like Francesca (Andrew Kaczynski) waging war against AT/RT with treatments no better than the ones for Declan over a decade ago. Then so many other heartbreaking stories, kids are still dying everyday from cancer, kids are suffering everyday with the same cut, burn and poison options because there are not big dollars for childhood cancer research.
We need to make more noise and Congress to make childhood cancer research a #NationalPriority --

Ten years ago Journey4ACure started funding Dr. Michael Jensen's immunotherapy research at Seattle Children's hospital. Research that would give kids options, less invasive treatments ... his research is beginning to pay off. Thank you for helping us raise awareness and support important research.

https://pulse.seattlechildrens.org/tiniest-cancer-immunotherapy-trial-participant/

Greta Oberhofer, now 7 years old, was the first patient under age 2 included in Seattle Children’s cancer immunotherapy clinical trials.

Photos from Jace Ward - #Tough2Gether's post
04/17/2021

Photos from Jace Ward - #Tough2Gether's post

Photos from Elijah's Big Journey's post
04/16/2021

Photos from Elijah's Big Journey's post

SATURDAY May 1st!  Still time to register to run or donate!  Spring is in the air and we desperately need your support! ...
04/12/2021

SATURDAY May 1st! Still time to register to run or donate!

Spring is in the air and we desperately need your support! Please sign up for Run the greenway today! Lots of options for supporting childhood cancer, for having fun too! Please sign up today and ask your friends to sign up too!

https://runsignup.com/Race/VA/Dulles/RunTheGreenway

SATURDAY May 1st! Still time to register to run or donate!

Spring is in the air and we desperately need your support! Please sign up for Run the greenway today! Lots of options for supporting childhood cancer, for having fun too! Please sign up today and ask your friends to sign up too!

https://runsignup.com/Race/VA/Dulles/RunTheGreenway

04/11/2021

Best news yet. Finally, Jace is turning the corner after a rough 18 days. In our childhood cancer world, what Jace is doing is as big as Neil Armstrong's trip to the Moon and back. This is Jace's third trip to the "moon" and back. Hopefully he will be able to return to Kansas soon. Godspeed Jace Ward! Here's the latest from Lisa Ward, " Want to know the secret sauce to this guy bouncing back?? CHIEFFFS cookies!! A gift from Mark and Kristin Gardner Uhlrich and Handmade Sugars!! These are THE best cookies we have ever tried!! He has waited THREE days to feel well enough to eat them!!! Celebrating the first pain free day and appetite in 18 days!! (Thanks team for the perfect migraine mix and thank you all for the prayers!!). Maybe we forgot to report Thursday’s MRI showed the tumor was less dense in many places and the labs watched for Car T action were highest today!! 💪🏼#Comeback Season starts today!#tough2gether #icantdieimbusy"

04/11/2021

Today we honor and remember Kyle Addington on his 22nd birthday in heaven. Here is an update post from his family.

Happy Birthday in Heaven, Kyle.

On this day 22 years ago, we were blessed by the birth of our son Kyle, who came into this world at a whopping 9 lbs 11 oz and 22 inches long. All parents have hopes and dreams for their children and most importantly, we want our children to be healthy and happy.

Kyle was a happy kid. He was funny, smart, handsome, sweet, tough, interesting, curious, creative. I could go on and on. He was always making us laugh with his antics. He loved animals, cars, computer gaming, and wrestling with his high school team. Most of all he loved his family and his close friends. He was the kind of kid who always put others’ needs before his own and was fiercely loyal.

Many people who knew Kyle didn’t realize that this happy kid grew up with food allergies (egg, wheat, peanuts) and Crohn’s Disease. He never let either get in his way. So, in December 2014 when he was diagnosed with Acute Myeloid Leukemia (AML) he wanted to get his treatment over with so he could get back to his life. He had a positive attitude, never complained, was in one of the best medical facilities in the world, and had the love and support of more people than he even knew.

All of this was no match for his treatment-related AML which resisted three rounds of chemotherapy, an investigational drug, radiation, and a bone marrow transplant. Kyle passed away on July 15, 2015 at the age of 16—one week after he returned from his Make-a-Wish trip to Disney World.

At the outset of Kyle’s diagnosis when I asked his oncologist what his chances were for a cure, he told me 50/50. Those odds kept getting worse as his cancer proved too much for the treatment. Kyle was not eligible for many clinical AML trials because he was a pediatric patient and adults had to go through trials first. We ran out of options.

No child should ever run out of options to live their life because treatment for their type of cancer hasn’t been improved upon in 20-30 years.

We are heartbroken at the loss of our precious son. Our hearts feel like they have been ripped out of our bodies. But, we are fighting and will continue to fight in Kyle’s memory for all the children who are battling cancer, who will battle cancer, who are survivors, and who had their lives cut short because of cancer. We fight because of Kyle and because that’s what he would have wanted us to do. He wanted there to be a cure for cancer so other kids wouldn’t have to go through what he did.

We are Crusaders conquering childhood cancer. Join our fight at:

Kyle's Crusaders

Wendy, Mike & Ryan Addington

Happy Birthday to awesome cancer fighter and childhood cancer advocate Kyle Stepp!
04/11/2021

Happy Birthday to awesome cancer fighter and childhood cancer advocate Kyle Stepp!

Happy Birthday to childhood cancer survivor, amputee and advocate, Kyle Stepp from New Mexico!

A CureFest host, Kyle is an all around great guy and one of the most inspirational persons we have ever met!

Please join us in wishing Kyle a very happy birthday!

#StepByStepp #OneSteppAtATime #NewBeginnings #AmputeeLife #OptOutside

Photos from Nathan the Super Hero's post
04/10/2021

Photos from Nathan the Super Hero's post

Photos from TheTruth365's post
04/09/2021

Photos from TheTruth365's post

04/08/2021

Coming this Sat., Apr. 10 at 11 a.m. ET on Facebook Live!

The Gabriella Miller Kids First Research Act 2.0 Youth Advocate Roundtable is this Saturday morning on Facebook Live. Hosted by US Congresswoman Jennifer Wexton from VA, this online panel features childhood cancer fighters and survivors from across the country.

One of several roundtables planned for this year, the advocates will share their stories and discuss the importance of this new legislation.

Stay tuned for the link to the Facebook Live Roundtable! You can also visit Congresswoman Jennifer Wexton’s page on or after April 10 at 11 a.m. ET to watch the live or recorded discussion.

++++++++++++++++++

The Gabriella Miller Kids First Research Act was signed into law in 2014, establishing the Ten-Year Pediatric Research Initiative Fund and authorizing $12.6 million in annual funds for childhood disease research through Fiscal Year 2023. Since the original law was enacted, Kids First has made progress towards understanding childhood cancer and disease, such as initiating the Gabriella Miller Kids First Data Resource Center—a comprehensive data resource for research and patient communities meant to advance discoveries. Wexton’s legislation provides a new source of funding for the program which is expected to be exponentially larger and without an end date.

The 2.0 version of the bill would redirect penalties levied against pharmaceutical, cosmetic, supplement, and medical device companies by the U.S. Securities and Exchange Commission (SEC) for violating the Foreign Corrupt Practice Act (FCPA) towards the Kids First program. In recent years, hundreds of millions of dollars in penalties have been levied against these companies, and the Gabriella Miller Kids First Research Act 2.0 will help channel those funds directly to critical medical research focused on children.

Smashing Walnuts Arms Wide Open Childhood Cancer Foundation

Ohio friends ....
04/08/2021

Ohio friends ....

On Wednesday, April 21st from 10am - 4pm at the Fairborn Senior Center, we are sponsoring a blood drive in honor of Thomas Harris.

Thomas is the son of our City Engineer and was recently diagnosed with brain cancer. By participating in the blood drive you could help kids and others like Thomas fight through tough battles.

You can register for the blood drive at: redcrossblood.org
Sponsor Code: THOMAS

Or you an email Jenny Abling at [email protected]

SATURDAY May 1st!Spring is in the air and we desperately need your support!  Please sign up for Run the greenway today! ...
04/03/2021

SATURDAY May 1st!

Spring is in the air and we desperately need your support! Please sign up for Run the greenway today! Lots of options for supporting childhood cancer, for having fun too! Please sign up today and ask your friends to sign up too!
https://runsignup.com/Race/VA/Dulles/RunTheGreenway

Team Beans
03/29/2021

Team Beans

According to research from the Children's Hospital of Philadelphia, 35% of parents and 24% of children have significant PTSD following a child's cancer diagnosis and treatment.

For so many pediatric cancer families, diagnosis and death will always be the dividing line in our lives. Everything came before and everything after.

There has to be better ways to treat kids other than using harsh treatments (downsized adult protocols) that have disabl...
03/22/2021

There has to be better ways to treat kids other than using harsh treatments (downsized adult protocols) that have disabling impacts on these children. Only through research will that happen. Please support support efforts to make childhood cancer research a #nationalpriority.

Founders Michael Wiggins and Melissa Wiggins son, Cannon, was diagnosed with Stage IV high-risk neuroblastoma when he was just 20 months old. He endured surgeries and “diluted” chemical treatments meant for adults, which caused him loss of hearing and decay to all of his teeth. Michael & Melissa knew there had to be a better way to save children from this pain.

That is why #CKc was founded to find better solutions for childhood cancer treatments through innovative, first-of-its-kind research. #ResearchIsTheKey
https://cannonballkidscancer.org/

Spring is in the air and kids could really use your help.  Will you sign up for Run the Greenway on May 1st.  You can do...
03/21/2021

Spring is in the air and kids could really use your help. Will you sign up for Run the Greenway on May 1st. You can do a 10K, a 5K, a family fun run, a virtual run or just donate. We desperately need your support to keep research and those ipad boxes going! Please help and SHARE! Thank you!

https://runsignup.com/Race/101871/Charity/15612

Fighting For Izzy
03/21/2021

Fighting For Izzy

A couple nights ago Izzy wasn't feeling well and I snuggled on the couch with her while she tried to sleep. I began to silently cry and she asked, "Why are you crying, Mama?" I told her honestly, I was sad that I couldn't make her better. "It's not your fault," she said. "I'm just glad I'm not in the hospital." She smiled at me and I really started crying then. But those tears were each filled with just a hint of peace. To be so ill, but to be so thankful just to be home. I cannot imagine. // No, we are not in the hospital. We're not doing that. That thing that we've been for so many years. Now we're living.

Blessings on you today and LIFE for Izzy.

#fcancer #cancersucks #cancer #childhoodcancerawareness #pediatriccancer #neuroblastoma #childhoodcancerawareness #morethan4 #morethanfour #izpossible #nomatterwhat #mamabear #advocate #caregiver

Hard to believe it has been 5 years.  RIP sweet Delaney, sorry we failed you, you are loved and missed.
03/21/2021

Hard to believe it has been 5 years. RIP sweet Delaney, sorry we failed you, you are loved and missed.

Five years ago today, our beloved friend Delaney Clements passed away after a long battle with childhood cancer. As captured in these two photos, Delaney was a beautiful, old soul with wisdom beyond her years. She was also happy-go-lucky child with a bubbly personality who loved to be silly and make others laugh.

We loved Delaney more than words can words can express. She made everyone she met feel like they were the most important person in the world. Not a day goes by that we do not think about Delaney.

During the years that we teamed up with Delaney, she taught us many life lessons that we do our best to follow each day. Even though she left this earth 5 years ago, she continues to lift our spirts and motivates us to keep advocating for all children diagnosed with cancer.

We will never forget Delaney and feel truly blessed to have known her. ❤❤❤

Please keep Delaney's family in your thoughts and prayers today and every day!

Team Cure
03/15/2021

Team Cure

At 6:35 this morning, Landon passed away painlessly surrounded by his family.
Our hearts, thoughts and prayers go out to his mother, father, and sister Hayden as they grieve and adjust to life without their beloved boy physically here.
Fly high Landon, you are free.
IG: @rebecccccccccccccca

TheTruth365
03/15/2021

TheTruth365

17-year-old 2x cancer fighter Grace West is working hard on her 2021 resolutions. Her goals are to love herself and to bring attention to life after trauma and cancer.

Here is Grace in her own words...

"i’ve struggled loving myself when it feels like my body is always against me. this is my second time going through treatment but my first time during a pandemic.

"i haven’t been out anywhere since last march besides the starbucks drive thru and the hospital. everything is so extremely isolating it led me to hyper focusing on myself, my body and my thoughts. i’ve had a hard time appreciating my body as it it because of social media influence, toxic diet culture and disordered eating especially after going through treatment the first time.

"i don’t know if other kids like me have experienced the same but it’s so important to normalize NORMAL BODIES. i do have a really hard time loving myself and my body but my scars show that my body has carried me through so much in my life. the good and the bad. after seeing myself during treatment just over 60 lbs for so long i had a hard time living with a healthy nourished body and mind. after this round of treatment i want it to be different.

"i want to be proud of myself and my body for carrying me through and fighting against all odd and i want to encourage other kids like me or ANYONE to do the same. i am really still learning and trying to love myself. i’m posting this because i have felt so alone in my feelings about my body, myself and my mental health especially after cancer treatment.

"i just hope to bring attention to the fact that some of the time i’m not strong and i’m extremely hard on myself and that is so normal. one of my 2021 resolutions is to try to love myself and bring attention to life after trauma and cancer."

Please leave a message of support for Grace by commenting on this post!

Charlie's Angels In Effect
03/14/2021

Charlie's Angels In Effect

Here we go again....we got Charlies scans back and it is not what we wanted to hear. She has more spots. Now it is on or in (not sure which yet) both sides of her hips, and the top of both femurs. Also it is on or in, her shoulder bones and is invading the spaces between her spinal bones. This is also compressing nerves which is the reason for her having leg pain and not being able to put any weight on both legs and having trouble with going to the bathroom. Because the cancer has grown so fast, and we know this because of when the pain started and how it progressed through the parts of her legs so fast that we knew we needed to start something ASAP. So we are staying in PA for a little bit so we can start chemo today and start the simulation and 1st dose of radiation Monday. The chemo will take place inpatient over 5 days, for the radiation we are still not sure if it will be 5 higher doses or 10 lower doses. Please pray for Charlie this such a fast pace disease and very unpredictable, and please keep little Mckenzie in your prayers too, that she will keep finding happiness during this time while we are here with sister.

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43300-116 Southern Walk Plaza #649
Ashburn, VA
20148

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Why we Journey

Childhood cancer is the #1 disease related killer of kids in the United States, and the incidence of childhood cancer continues to rise. Each day 43 kids are diagnosed and 7 of those kids are terminal on diagnosis. Our leaders believe that childhood cancer is rare and not worthy of being a priority when it comes to how BILLIONS of research dollars will be spent each year. They believe that the 2,000 kids a year that lose their battle with cancer and the half a billion survivors of childhood cancer don’t rise to the level of a national priority. So kids continue to suffer and die due to the fact that childhood cancer research is not a priority and that means there are insufficient pediatric drugs, treatments and protocols to cure childhood cancer. Help us change this picture for kids, help us demand that our kids and childhood cancer research become a #nationalpriority!

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Elizabeth Weidner, 14 and a Stage IV Neuroblastoma Warrior who survives each day with that cancer! She is our daughter working on a project to EDUCATE the public about CHILDHOOD CANCER that she hopes to take with her when she speaks that will HONOR all those who participate! She is currently, the Effingham County Fair Queen Jr. Miss and the Beauty of Hope Benefit Pageant Illinois/Indiana for the American Cancer Society Jr. Miss who has something to say with her platform Crowns Against Cancer! If ANYONE has a cancer t-shirt (any size new, outgrown, or faded will work) that you would to donate to this educational project, please IM for our address. She's especially interested in t-shirts that are specific to the CHILDHOOD CANCER fight since she herself is in that fight trying to educate, motivate, and take action! However, she will accept any shirts though that are caregiver, warrior, or motivational (fundraiser/foundation/meaningful quotes) cancer shirts. Please feel free to share this post with others! THANK YOU in advance. Please delete if it doesn't meet your mission!