July Adolescent & Young Adult (AYA) Newsletter
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In this month's newsletter you will find wish granting opportunities with a deadline TODAY, networking and support groups, caregiver support group, financial assistance information, upcoming virtual events, paid research opportunities, and more.
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Follow our Social Media pages to stay up to date about opportunities and resources. Email us with any questions at: aya@peds.bsd.uchicago.edu
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Patients & Caregivers, do you have an urgent medical question and / or unsure if it's an emergency?
Please call us at:
773-702-6149 for patients who see Dr. Stock, Dr. DuVall & Rebecca Pape APN
773-702-6808 for patients who see Dr. McNeer, Dr. Henderson, Dr. Desai & Kelly Kramer APN
Please, do not hesitate to call us.
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Why should I try Support Groups?
you might be asking...
Sometimes it's nice to talk to someone who just gets it. The info below offers different types of support and networking groups. Check them out and register.
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UChicago & Comer AYA Group
Join our Adolescent and Young Adult (AYA) group that meets every Tuesday at 12 pm via Zoom! This group is targeted to our AYA patients. Patients can self refer themselves to the group and or may also be referred by your doctor.
For more information, questions or to join the group, please contact:
Ilayna Mehrtens, Ph.D. imehrtens@yoda.bsd.uchicago.edu
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UChicago & Comer Inpatient Support Group
This group is targeted to our adolescents and young adults who are inpatient. Please note: this group is not specific to oncology patients only, rather any patient who is in the hospital. To join the meeting:
- Scan the QR code using a smartphone or tablet or
- Go to zoom.com, select "join a meeting" and enter meeting ID and password
Meeting ID: 926 1474 3178
Password: Comer123
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Want to meet people who just ''get it''? Stupid Cancer Meetups are social gatherings for the adolescent and young adult community. Connect with other patients, survivors, caregivers, and professionals to build lasting friendships with people that share your experiences.
These aren't support groups... Stupid Cancer Meetups are a space to have fun and connect with your peers, without stigma or awkward questions. We don't shy away from heavy conversations, but there will definitely be laughs.
Don’t be shy - come meet your new friends!
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Thursday, July 1 at 10 am: Black Women of Ethnicities Drop-In Group - Please join the Black Women of Ethnicities Group for this supportive monthly group. Black Women of Ethnicities Group is of women who collaborate and empower one another while discussing challenges such as facing gender discrimination, bias environments, compounding obstacles of racism and building relationships all through the impact of cancer diagnosis.
Tuesday, July 13 and 27 at 5 pm.: Men's Group - This men's only group is for those who are living with cancer or have a loved one living with cancer. Topics may include cancer and wellness, sports and movies and anything in between.
Tuesday, July 13 at 5:30 pm: LGBTQIA+ Support Group - Please join this supportive drop-in group for those who identify as LGBTQIA+ and have been impacted by cancer, including those who are living with cancer, family members and friends.
Wednesday, July 14 at 6 pm: Cancer Survivors Support Group - Please join this supportive drop-in group for a time to connect and share experiences about life after cancer treatment. This group is open to men and women with any cancer diagnosis.
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Tuesday, July 20 at 10 am: Grupo de Apoyo Mensual - Reunirse con el grupo de apoyo mensual para Latinos impactados por cancer, incluyendo gente viviendo con cancer, familiares y amigos. En el grupo pueden obtener información, compartir recursos y recibir apoyo emocional.
Tuesday, July 20 at 6 pm: Young Adult Support Group - Please join this supportive drop-in group for young adults (18+) who have been impacted by cancer, including those who are living with cancer, family members and friends.
Tuesday, July 20 at 6 pm: Living Beyond Grief Support Group - This caring, supportive group is open to anyone experiencing grief due to a cancer-related loss. Family and friends are welcome to attend.
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Weekly Virtual Happy Hour - Join us every Friday for Virtual Happy Hour at 4:30 pm. We will be hosting an online virtual happy hour! We will use this time to talk about the AYA cancer community, Elephants and Tea, and play a game!
For more information & to register, please visit their website.
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Young Adult Coping Circle Virtual Workshops
Are you a Young Adult affected by cancer? Are you seeking more information about the impact of cancer, survivorship or quality of life?
CancerCare is hosting a series of virtual educational workshops for Young Adults between the ages of 19-39 who have been affected by cancer. These virtual workshops will provide information pertaining to relevant topics such as fertility preservation, dating & relationships, survivorship, nutrition & exercise, communicating with your medical team, returning to work/disclosing in the workplace and many others!
Sex & Sexuality During & After Cancer Treatment
Tuesday, July 20, 2021, 6:00 p.m. - 7:30 p.m.
Melissa Donahue, MSW, LMSW, CST, CSTS
The Top 5 Most Important Nutrition Tips for Cancer Treatment*
Tuesday, July 27, 2021, 6:00 p.m. - 7:30 p.m.
In partnership with Savor Health
Karen Berg, Oncology Dietician, MS, RD, CSO, CDN
*The second half of the workshop will include a cooking demo! The ingredient list will be sent following registration if you are interested in cooking along with Karen.
For more information and to register, contact: our Hopeline at 800-813-HOPE (4673) or contact our Young Adult Program Manager, Marlee Kiel, LMSW, at 212-712-8029 or mkiel@cancercare.org A secure link will be sent once registration is complete. This program is free, but pre-registration is required.
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Enhancing Your Skills: Prepping for Success
Wednesday, July 7, 2021 — 12:00 PM CT
Professional skills, hard skills, soft skills, foundational skills — what’s the difference? And why does it matter? For anyone looking to change jobs or careers post-cancer, a key first step is identifying what you can do already and what you need to learn in order to land the role you want. This session will help you make sense of this alphabet soup of skills and how to add to your personal batch to make it even richer. Register here.
11th Annual National Conference on Work & Cancer
Friday, June 25 - 7:45 AM - 4:00 PM Central Time
Our 11th annual National Conference on Work & Cancer will be held virtually on Friday, June 25, 2021. This free, daylong event, which explores the complexities of balancing treatment and recovery with employment, is open to patients, survivors, caregivers, healthcare professionals, advocates, employers/HR and anyone else touched by cancer.
Topics:
- Disclosure & privacy
- Working through treatment
- Legal issues
- Job search
- ...and more!
Register for this FREE conference.
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Perkatory (per-kah-tawr-e): Brewing Tough Conversations to Help Each Other Face Cancer
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Oregon Health & Science University and OCHIN:
Understanding the Experiences of Adolescent & Young Adult (AYA) Cancer Survivors
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Study Opportunities for Patients and Caregivers
Rare Patient Voice connects patients and caregivers with the opportunity to voice their opinions through surveys and interviews to improve medical products and services. We currently have over 190 market research studies open for patients and caregivers. A few of the studies we are working to fill immediately are listed below. Feel free to also share this page with friends or family who may be interested. Become a patient research volunteer today and get paid for your time. Learn more here.
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Self-care, Grants & Other Resources
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Life List Program
Thursday, July 1 at 11am
LifeList is a wish-granting program that offers hope and guidance to adolescent and young adult patients who are currently receiving treatment for life-threatening cancer diagnoses. This program gives patients positive experiences to focus on during treatment and also provides the opportunity to connect with a community of AYA patients, survivors, and advocates who have experienced similar journeys. Applications are first come, first serve. The next cycle of LifeList will open for applications TODAY at 11 am. Learn more and apply TODAY.
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Nik's Wish Gap
Nik's Wish is to bring joy throughout the nation to young adults (18-24) and their loved ones, fighting cancer. The mission of The Nikolas Ritschel Foundation is to enrich the lives, stimulate encouragement, and strengthen the faith of cancer patients who are between 18-24 years old and their loved ones. Learn more about Nik's Wish Gap program and apply today. Application available in Spanish.
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We're making cancer less lonely
Alula's pioneering digital solutions are designed to help patients and their loved ones navigate the most daunting aspects of cancer. With our organizational tools, products, and content, you’ll never feel lost or alone. Cancer can make you feel lost, but we’ll help you find your way, because your needs don't end when you leave the hospital or doctor's office. Whether you're shopping for medical supplies, looking for help and support from your loved ones, or seeking to connect with other patients and survivors- Alula is for you. Explore Alula. Connect with their Instagram and Facebook.
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A free webpage to bring your community of support to help keep life moving. With Caregather, keep friends and family up to date, share ways they can lend a hand, and make it easy for them to send their support from afar.
"How can I help?"
Friends and family will want to be there. Caregather will guide your community to the best ways they can support on the ground or send love from afar. Sign up for your own personalized page today!
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Managing Neuropathy after Transplant
Neuropathy (nerve damage) is common after high-dose chemotherapy and a stem cell transplant. Peripheral neuropathy can cause tingling or pain in the arms, hands, legs and/or feet. Other types of neuropathy can cause symptoms ranging from dizziness when standing, problems with digestion and urination to loss of balance, numbness, and muscle atrophy.
Highlights:
- Peripheral neuropathy is the most common type of neuropathy that occurs after transplant
- Autonomic neuropathies affect involuntary bodily functions, like digestion and urination, and are sometimes confused with normal symptoms of aging
- Exercise can actually cause new nerves to grow to replace damaged nerves
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Send It Foundation
The Vy Nguyen Koller Grant
What's your dream adventure? The Vy Nguyen Koller Grant is designed to inspire empower young adult cancer survivors to activate their dream trips, embrace the challenges and the beauty of the outdoors, push boundaries and live for today. Named for Send It alumni, this grant is an opportunity to realize the adventures and experiences you dream about, big or small. What is something you have always wanted to accomplish, but need support to get there? What is the ultimate goal, experience, or project you would like to pursue? The Vy Nguyen Koller Grant is available to cancer survivors ages 21-40. View more information and application here.
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Are you a cancer fighter, survivor, previvor or caregiver looking for one–on–one support?
Imerman Angels partners individuals seeking cancer support with a Mentor Angel — a cancer previvor, survivor or caregiver who has been in their shoes. These one-on-one relationships inspire hope and offer the chance to ask personal questions and receive support from someone who is uniquely familiar with the experience.
The service is absolutely free and helps anyone touched by any type of cancer, at any cancer stage, at any age, living anywhere in the world. Each applicant speaks personally with a staff member of Imerman Angels and all Mentor Angels are properly screened and trained. Learn more and request a mentor!
Are you a cancer fighter, survivor or caregiver looking to provide support to someone touched by cancer by becoming a Mentor Angel?
Learn more here on how to become a Mentor Angel!
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Leukemia & Lymphoma Society has a program called First Connection. It’s made up of a team of incredible volunteers who have been through it. They’re survivors, caregivers, parents, spouses, and children of survivors. Request a First Connection Peer here.
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First Connection peer volunteers are in a unique position to provide support and community resource information to others facing a similar cancer diagnosis. Patients and their family members are matched with peer volunteers based on diagnosis, age, gender and other factors that might create a mutual understanding and ease of communication. Peer volunteers are trained in basic counseling skills, are regularly updated about LLS and community resources, and are committed to confidentiality.
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AYA Mental Health Leadership Council
Check out the full details here.
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Children's Oncology Group
Children’s Oncology Group new educational resource: A New Diagnosis Guide for Teens and Young Adults (AYA New Diagnosis Guide). This guide was created to help teens and young adults focus on the most important information they need at diagnosis, and includes topics that are of particular interest to AYAs. This teaching tool is intended to be provided to your AYA patients after diagnosis, and before first discharge home from the hospital or clinic. The AYA New Diagnosis Guide is available for download from the COG Public Website and is available in English, Spanish and French.
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Cancer Related Podcasts
- In partnership with @thecancerpatient, we are proud to launch The Cancer Patient Podcast! A podcast for cancer patients, by cancer patients providing information, validation, and connection with a side of humor, sarcasm, and wit.
- Sexually Speaking: Dr. Anne Katz is a certified sex counselor, clinical nurse specialist, and author. Listen to her Podcast, Sexually Speaking.
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Beyond Cancer: This podcast series features cancer survivors sharing how they've navigated the physical side effects, emotional challenges, and different dynamics of life during and after cancer treatment.
- Man Up to Cancer: I'm a stage IV colon cancer survivor, and I have a message for other men: You don't have to go through this alone. Man Up to Cancer inspires men to connect and avoid isolation throughout our cancer journeys. We are changing what it means to “Man Up” in the face of cancer.
- Your Stories: Conquering Cancer: Listen to candid conversations between people conquering cancer – patients, their family and friends, and doctors and researchers working to help us all.
- The Stupid Cancer Show: The Stupid Cancer Show is an award-winning international podcast that, across 11 years and more than 400 episodes, has given voice to the young adult cancer movement. Each broadcast tackles hard-hitting, real-world issues ranging from politics, health care, legislative advocacy, civil liberties and the environment to social media, entertainment, cancer research and medical education.
- Life on Pause: Life On Pause is a podcast for and by young adults living with cancer. Each month, young adult cancer patients from Penn State Health share honestly about their cancer diagnosis, treatment and life afterwards. As cancer causes the group to reflect on issues both large and small, surprisingly relatable stories and themes emerge. From relationships to body functions, nothing is off the table.
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AYA Cancer Chat: Life Interrupted: Listen in as adolescents and young adults (AYA) from the Cancer Center at The Children's Hospital of Philadelphia discuss their experiences with cancer diagnosis and treatment in this podcast, AYA Cancer Chat: Life Interrupted.
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The Cactus Cancer Society’s mission, formerly Lacuna Loft, is to provide a safe space where young adults facing cancer can breathe easier knowing that there are others here who understand what they are facing. Our community offers an escape from the harsh realities of cancer, and an opportunity to cope through creativity and expression, and continue to grow and thrive.
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We challenge traditional ways of delivering cancer survivorship support for young adults by providing access to support and community virtually – no matter who they are or where they are. As the first virtual cancer support community for young adults, we help others feel less isolated, more connected, and more capable of using their story and their voice.
Cactus Cancer Society programs are the fastest and easiest way to connect with other young adult cancer patients, survivors, and caregivers.
Over the next few weeks, we’ll be moving over to our new website so stay tuned!
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With a scarcity of resources geared specifically to men's unique needs, Cancer Dudes was created to provide education and resources in order for men to successfully move past their cancer experience. Visit their webpage here.
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Hearts Need Art believes in helping to build an equitable community through healing arts provided at no cost to patients and their caregivers. No prior experience necessary. View Programs >>
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Facing cancer is hard. You don’t have to go through it alone. Meet Vivibot, a mental health chatbot that listens.
Designed by and for young adults dealing with cancer, Vivibot helps to reduce anxiety and depression and boost resiliency. She does this by providing a safe and secure space to express how you feel and empowers you to regain your sense of control. She can also help to create good habits through kindness and gratitude – for yourself and others.
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We are a 501(c)(3) nonprofit organization that tries to bring joy and humor to cancer patients, survivors and their caregivers -- with a particular focus on those in their 20s, 30s and 40s. People share humorous stories from their cancer journeys on our blog. Check it out here.
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Free Drop-In Virtual Mindfulness Meditation Classes. If you want to start or strengthen your mindfulness practice, please consider attending some of these video-conference based classes, taught by some of TNT’s amazing mindfulness guides. Learn more here.
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Triage Cancer hosts free, in-person and online educational events, for individuals diagnosed with cancer, caregivers, & health care professionals. Learn more here.
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Cancer and Careers’ Balancing Work & Cancer Webinar Series offers sessions related to the challenges of balancing work and cancer. Learn more here.
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Burnalong is offering a free subscription for online fitness classes for AYAs to exercise in a group setting! Learn more here.
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 Free Meditation for beginners. Headspace
offers FREE tips and audio clips for beginners
(Just scroll pass the "free trail" button to get to the
good stuff!). Learn more here. |
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Financial Assistance Opportunities
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The Leukemia and Lymphoma Society have the following funds open for co-pay assistance: Chronic Lymphocytic Leukemia (CLL), Mantle Cell Lymphoma (MCL), Myeloma and Myelodysplastic Syndromes. Learn more here.
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Cancer Care has several funds open for copay assistance including acute lymphoblastic leukemia (ALL), chronic lymphocytic leukemia, melanoma, among others. Click here for more information.
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The National Organization for Rare Disorders has several assistance programs open including cutaneous t-cell lymphoma among others. Learn more here.
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The PAN Foundation has several assistance funds open including chronic lymphocytic leukemia, mantle cell lymphoma, and melanoma, among others. Click here for more information.
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The Leukemia Research Foundation Patient Grant is a one-time grant for eligible patients with a blood cancer diagnosis – leukemia, lymphoma, myeloma, or MDS. The maximum grant award is $1,500.00 per applicant. Application is open now. Learn more here.
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The SamFund provides grants for 21-39 year olds post-treatment or on maintenance therapy. They also offer financial education webinars & toolkits. Learn more here.
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DAM Cancer provides financial assistance to young adults, ages 18-35, who have cancer. Learn more here.
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Healthwell Foundation provides financial assistance to the underinsured through grants to help with copays, premiums, deductibles, and out-of-pocket expenses. Learn more here.
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We understand that you may need help to stay afloat during treatment. If you’re eligible, we can provide a grant to cover non-medical, everyday living expenses, such as mortgage payments, utilities, groceries, and transportation costs. Learn more here.
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The Andrew Weishar Foundation uplifts the lives of families with adolescents and young adults battling cancer. We provide direct financial assistance and ensure families know they are not alone in this fight. Learn more here.
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College Scholarship Opportunities
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Cancer For College provides college scholarships for young adults diagnosed with cancer. Learn more here.
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The Simon Cancer Foundation financially assists cancer patients by awarding scholarships for education. Learn more here.
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The National Collegiate Cancer Foundation provides need-based financial support to young adults who are pursuing higher education in treatment and beyond. Our 2021 Scholarship program will open mid-March 2021. Learn more here.
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The Patient Advocate Foundation awards scholarships to cancer patients as well as provides financial assistance through their co-pay relief program. Learn more here.
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