PREP4Gold

PREP4Gold Establishing prevention-minded care for children with cancer PREP4Gold strives to establish the next generation of prevention-sensitive care - supporting PREVENTION, RESEARCH, EDUCATION and PROGRAMS - for children with cancer and their families in four key areas: environment, treatment, cure, and survivorship.

PREP4Gold is a sweeping initiative approaching the issue of prevention as it relates to every aspect of childhood cancer:
​-reducing the number of children diagnosed with cancer
-eliminating the harmful effects from toxic and outdated therapies
-removing disparities in care of underserved populations
-tackling the struggles experienced by survivors
-protecting families from the often-overlooked psychosocial harm associated with the diagnosis of childhood cancer and lifelong side effects

Operating as usual

“CURE IS NOT ENOUGH”  This is wonderful, but we need to make sure that childhood cancer is not overlooked. So often, whe...
10/15/2021
Office of Cancer Survivorship

“CURE IS NOT ENOUGH” This is wonderful, but we need to make sure that childhood cancer is not overlooked. So often, when general statements like this are made, it is understood to only be adult cancers. Grateful to its reference for the STAR Act and Disparities and Barriers to Pediatric Cancer Survivorship Care. This is so critical for childhood cancer! https://cancercontrol.cancer.gov/overview-highlights/2021/progress_ocs.html

Learn more about how OCS supports efforts to improve the well-being of cancer survivors.

10/14/2021
10/14/2021
Another study validating why the psychosocial standards for patients with childhood cancer & their families should be in...
10/11/2021
Long-term health-related quality of life in young childhood cancer survivors and their parents - PubMed

Another study validating why the psychosocial standards for patients with childhood cancer & their families should be in practice. "However 38.5% of parents reported HRQoL (health related quality of life) that was clinically meaningfully different from perfect health, and parents experienced more problems with anxiety/depression (43.4%) than population norms (24.7%, p < .0001). Worse child HRQoL, lower parent resilience, and higher fear of recurrence was associated with worse parent HRQoL." https://pubmed.ncbi.nlm.nih.gov/34606168/

Parents report that young survivors experience small but significant ongoing reductions in HRQoL. While overall mean levels of HRQoL were no different to population norms, a subset of parents reported HRQoL that was clinically meaningfully different from perfect health. Managing young survivors' lat...

Another important step in the fight against medulloblastoma https://www.onclive.com/view/fda-grants-rare-pediatric-disea...
10/10/2021
FDA Grants Rare Pediatric Disease Designation to 177Lu-Omburtamab-DTPA for Medulloblastoma

Another important step in the fight against medulloblastoma https://www.onclive.com/view/fda-grants-rare-pediatric-disease-designation-to-177lu-omburtamab-dtpa-for-medulloblastoma

The FDA has granted a rare pediatric disease designation to lutetium-177-omburtamab-DTPA for use as a potential therapeutic option in pediatric patients with medulloblastoma, according to an announcement from Y-mAbs Therapeutics, Inc., the developer of the product.

Do you have a high schooler with an IEP/504/learning challenges/cognitive impact or mental health concerns? The Virtual ...
10/08/2021
About Us - differentchoices.org

Do you have a high schooler with an IEP/504/learning challenges/cognitive impact or mental health concerns?
The Virtual College & Career Transition Conversation Series for Students with IEPs, 504s and Mental Health Challenges - Oct 26 - 30th - provides some great information to help. https://www.differentchoices.org/?fbclid=IwAR3TT9aYJB4eVDG-HdhaqNLWWbqB0_YK139R4zRxhqC43i7xI8bNBmsIu5I

The Virtual College & Career Transition Conversation Series for Students with IEPs, 504s and Mental Health Challenges October 26th-30th, 2021 Register to attend. Free! 0 + Days of Programming 0 + Expert Presenters 0 + Attendees Our Partners Who It's For A free 100% virtual college & career transitio...

If your child is diagnosed with chemo-induced ADHD, it's good to have a sense of what that actually means. Especially fo...
10/07/2021

If your child is diagnosed with chemo-induced ADHD, it's good to have a sense of what that actually means. Especially for females, as it presents differently. While medication is not the first option of treatment, for our kids it often isn't available because the variety of medicines available to the general community aren't effective when chemo-induced. And if diagnosis is before puberty, be aware that things can progressively get more challenging in the teen years.

If your child is diagnosed with chemo-induced ADHD, it's good to have a sense of what that actually means. Especially for females, as it presents differently. While medication is not the first option of treatment, for our kids it often isn't available because the variety of medicines available to the general community aren't effective when chemo-induced. And if diagnosis is before puberty, be aware that things can progressively get more challenging in the teen years.

Thank you board members Amy Sapien and Judy Fulmer for your fundraising efforts during Childhood Cancer Awareness Month....
10/05/2021

Thank you board members Amy Sapien and Judy Fulmer for your fundraising efforts during Childhood Cancer Awareness Month. #PREP4Gold #ChildhoodCancerAwareness 🎗

Thank you board members Amy Sapien and Judy Fulmer for your fundraising efforts during Childhood Cancer Awareness Month. #PREP4Gold #ChildhoodCancerAwareness 🎗

5 pm ET TODAY: PREP4Gold's first Survivorship Committee meeting. If childhood cancer survivorship matters to you, we wou...
10/04/2021

5 pm ET TODAY: PREP4Gold's first Survivorship Committee meeting. If childhood cancer survivorship matters to you, we would love to have you join us!

Are you interested in joining a passionate team driven to make a difference for childhood cancer survivors? The PREP4Gold Surviviorship Committee will host its first meeting virtually Monday 10/4 at 5 pm ET. We'd love to build a large committee so we can accomplish our first year goals! We've got some great projects in mind to help survivors and their families. For questions or if you are interested, contact Mary Beth Collins: [email protected]

Wondering what to do with #CCAM now over? Year-long advocacy can be a simple as a car ride. Take your #childhoodcancer a...
10/02/2021
Taking Childhood Cancer Advocacy on the Road: Childhood Cancer License Plates – CAC2

Wondering what to do with #CCAM now over? Year-long advocacy can be a simple as a car ride. Take your #childhoodcancer advocacy on the road by purchasing a specialty plate for your car. Learn more about it by reading board member Mary Beth Collins's Survivorship Matters blog. https://cac2.org/taking-childhood-cancer-advocacy-on-the-road-childhood-cancer-license-plates/

For the entire month of September the world hears a great deal from the childhood cancer community, feverishly raising awareness, advocating for programs & funding, and sharing stories about treatment, survivorship, and bereavement. Social media posts are in abundance, medical experts and advocates....

Treat yourself to our Saturday Survivor Spotlight and this week's survivor Carolyn enjoying ball room dancing. You can a...
10/02/2021

Treat yourself to our Saturday Survivor Spotlight and this week's survivor Carolyn enjoying ball room dancing. You can also check out her website and book about faith can the cancer journey. Some of our survivors certainly have a lot to say about their experience, and they teach us a great deal. PREP4Gold's Saturday Survivor Spotlight goes monthly now that CCAM is over. We hope we can feature your survivor soon! https://www.prep4gold.org/survivorship

Treat yourself to our Saturday Survivor Spotlight and this week's survivor Carolyn enjoying ball room dancing. You can also check out her website and book about faith can the cancer journey. Some of our survivors certainly have a lot to say about their experience, and they teach us a great deal. PREP4Gold's Saturday Survivor Spotlight goes monthly now that CCAM is over. We hope we can feature your survivor soon! https://www.prep4gold.org/survivorship

Fellow #Childhoodcancer advocates, everyone has worked so hard this past month! Thank you for all you do! We're so grate...
10/02/2021

Fellow #Childhoodcancer advocates, everyone has worked so hard this past month! Thank you for all you do! We're so grateful for everyone's hard work. Please take time this weekend to take care of yourselves and replenish the reserves. We must take care of each other, and ourselves.

Fellow #Childhoodcancer advocates, everyone has worked so hard this past month! Thank you for all you do! We're so grateful for everyone's hard work. Please take time this weekend to take care of yourselves and replenish the reserves. We must take care of each other, and ourselves.

Yes #CCAM is over. Worried you may miss the enthusiasm, advocacy, networking, & determination to create more support for...
10/01/2021

Yes #CCAM is over. Worried you may miss the enthusiasm, advocacy, networking, & determination to create more support for kids w/ #childhoodcancer & their families? Don't fret!! Sept is over, but we'll be busy all year long!! Sign up for our newsletter and stay current on events, research, and ways you can get involved. Visit Prep4gold.org & scroll to the bottom.

Yes #CCAM is over. Worried you may miss the enthusiasm, advocacy, networking, & determination to create more support for kids w/ #childhoodcancer & their families? Don't fret!! Sept is over, but we'll be busy all year long!! Sign up for our newsletter and stay current on events, research, and ways you can get involved. Visit Prep4gold.org & scroll to the bottom.

10/01/2021

Instead of a fact for our last day of Childhood Cancer Awareness Month, we are instead sharing the stark reality of this dreaded disease. Another one of our kids, an incredibly young woman, so strong, so beautiful, and so talented was taken too soon. The CCAM Cancer Fact for Day 30 is that our children are dying. There is no soundbite, or freeflowing phrase, to minimize it or make it easier to hear. Instead we share a rememberence of one of our precious children who so sadly is no longer with us.

This is the #1 disease killer of our children. They aren't empty words; it is our reality. We lose so much promise, so much joy, with every child who passes far too soon. The reality is simple, we have to make a difference. We have to do more. Our children deserve better. This may the be the end of CCAM, but the fight isn't over. Tomorrow we will still be here advocating passionately. Join us as we continue to fight to save our children.

09/30/2021

Instead of a fact for our last day of Childhood Cancer Awareness Month, we are instead sharing the stark reality of this dreaded disease. Another one of our kids, an incredibly young woman, so strong, so beautiful, and so talented was taken too soon. The CCAM Cancer Fact for Day 30 is that our children are dying. There is no soundbite, or freeflowing phrase, to minimize it or make it easier to hear. Instead we share a rememberence of one of our precious children who so sadly is no longer with us.

This is the #1 disease killer of our children. They aren't empty words; it is our reality. We lose so much promise, so much joy, with every child who passes far too soon. The reality is simple, we have to make a difference. We have to do more. Our children deserve better. This may the be the end of CCAM, but the fight isn't over. Tomorrow we will still be here advocating passionately. Join us as we continue to fight to save our children.

As Childhood Cancer Awareness Month comes to a close, the work is far from over. Help us create the second generation of...
09/30/2021

As Childhood Cancer Awareness Month comes to a close, the work is far from over. Help us create the second generation of support for children impacted by childhood cancer. Contact us to learn more about our committees, getting busy on important objectives soon. Our Survivorship committee meets via Zoom on Monday at 5 pm ET. For more information, or to join, contact: [email protected].

As Childhood Cancer Awareness Month comes to a close, the work is far from over. Help us create the second generation of support for children impacted by childhood cancer. Contact us to learn more about our committees, getting busy on important objectives soon. Our Survivorship committee meets via Zoom on Monday at 5 pm ET. For more information, or to join, contact: [email protected].

So much needs to be done to help children with cancer worldwide. World Health Organization: "The reasons for lower survi...
09/29/2021

So much needs to be done to help children with cancer worldwide. World Health Organization: "The reasons for lower survival rates in LMICs (lower middle income country) include: delay in diagnosis and advanced disease, an inability to obtain an accurate diagnosis, inaccessible therapy, abandonment of treatment, death from toxicity (side effects), and avoidable relapse. Improving access to childhood cancer care, including to essential medicines and technologies, is highly cost effective, feasible and can improve survival in all settings."

So much needs to be done to help children with cancer worldwide. World Health Organization: "The reasons for lower survival rates in LMICs (lower middle income country) include: delay in diagnosis and advanced disease, an inability to obtain an accurate diagnosis, inaccessible therapy, abandonment of treatment, death from toxicity (side effects), and avoidable relapse. Improving access to childhood cancer care, including to essential medicines and technologies, is highly cost effective, feasible and can improve survival in all settings."

Thank you service dogs, and emotional support pets, for all you do to help our kids in need! 💛
09/29/2021

Thank you service dogs, and emotional support pets, for all you do to help our kids in need! 💛

Good to have some national attention on chemo-induced hearing loss. Any loss is significant in young children, but those...
09/29/2021
Tough Choices: Chemo That Can Save Kids With Cancer Can Also Damage Hearing

Good to have some national attention on chemo-induced hearing loss. Any loss is significant in young children, but those with moderate - profound loss experience impacts in just about every aspect of a person's life. Making progress in this area, and successfully preventing it will be a HUGE improvement in quality of life for our survivors. https://www.usnews.com/news/health-news/articles/2021-09-28/tough-choices-chemo-that-can-save-kids-with-cancer-can-also-damage-hearing

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This is a common image in the childhood cancer community. But it doesn't have to be that way. This is why the Psychosoci...
09/29/2021

This is a common image in the childhood cancer community. But it doesn't have to be that way. This is why the Psychosocial Standards for Children with Cancer was created. It should be part of treatment, and part of next stage, whatever that is. Learn more about psychosocial support by watching this webinar where some of our best experts talk about what it is, how it can help your child, and help families. Healing is important for your child, your other children, and yourself. The Psychosocial Impacts of Pediatric and Adolescent Cancers: Dr. Maryland Pao of the National Institutes of Mental Health moderated a panel consisting of Dr. Lori Wiener, the Co-Director, Behavioral Health Core; Head, Psychosocial Support and Research Program at the POB, Dr. Staci Martin, psychologist in the POB Health Psychology and Neurobehavioral Research Program and James L. Klosky, PhD Director, Psychological Services, Cancer Survivorship Division, St. Jude Children's Research Hospital. https://youtu.be/TR5dNbhmiAc

This is a common image in the childhood cancer community. But it doesn't have to be that way. This is why the Psychosocial Standards for Children with Cancer was created. It should be part of treatment, and part of next stage, whatever that is. Learn more about psychosocial support by watching this webinar where some of our best experts talk about what it is, how it can help your child, and help families. Healing is important for your child, your other children, and yourself. The Psychosocial Impacts of Pediatric and Adolescent Cancers: Dr. Maryland Pao of the National Institutes of Mental Health moderated a panel consisting of Dr. Lori Wiener, the Co-Director, Behavioral Health Core; Head, Psychosocial Support and Research Program at the POB, Dr. Staci Martin, psychologist in the POB Health Psychology and Neurobehavioral Research Program and James L. Klosky, PhD Director, Psychological Services, Cancer Survivorship Division, St. Jude Children's Research Hospital. https://youtu.be/TR5dNbhmiAc

This is today, noon ET. Join this important conversation focusing on longterm survivorship from the parent's perspective...
09/29/2021

This is today, noon ET. Join this important conversation focusing on longterm survivorship from the parent's perspective as well as talk about the impact on our siblings. @CancerSurvSM #LetsChat

Mark your calendars for this special Childhood Cancer Survivor Twitterchat with childhood cancer survivor father Chuck Forster. He'll comment on his parental experiences with his daughter over the years. Additionally, his career focused on counseling and school administration in public school. He earned his master's in the 80s, and wrote his master's thesis on counseling siblings of children with cancer. Tune in Wednesday to @CancerSurvSM and hear from this wonderful father & professional as he touches on so many important issues.

Webinar Oct 14th at 1pm: Eluna Community Conversations: Grief Through the Lens of Latino Culture.  The intimate processi...
09/28/2021
Welcome! You are invited to join a webinar: Eluna Community Conversations: Grief Through the Lens of Latino Culture. After registering, you will receive a confirmation email about joining the webinar.

Webinar Oct 14th at 1pm: Eluna Community Conversations: Grief Through the Lens of Latino Culture. The intimate processing of grief deserves a cultural-specific approach. If you work with Latino families in the childhood cancer community, this webinar will assist in providing culture-specific support to siblings. This will be a unique webinar aimed at exploring the Latino culture’s unique response to death and grief. Eluna's panel of experts will highlight Latino core values as well as cultural, spiritual, and lingual nuances in the landscape of children’s grief. In addition, the conversation will consider the universality of grief, regardless of someone’s cultural background.
Bereavement support professionals, volunteers, community organizations, and allies are invited to deepen their understanding of how to support grieving Latino children and families.

For more information, or to register: https://us06web.zoom.us/webinar/register/WN_jJRLa8scT8CJa5GwSg5EKQ

The Eluna Resource Center’s Grief Through the Lens series explores the rich diversity of cultural traditions and values that inform children’s response to death and bereavement. The upcoming Eluna Community Conversation will build cultural competency and deepen empathy as well as recognize the u...

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