Have You Heard Of Mend Together?

Lacuna Loft loves sharing resources we find valuable with you and today is no different. Few people probably know that Lacuna Loft started out as a sole proprietorship where we sold ‘cancer care packages’ for loved ones to buy a patient or survivor in their life. It had all of those great products that we as patients and survivors know are super helpful when you’re going through cancer treatment and entering survivorship. Out of that grew Lacuna Loft as you know it today, a nonprofit where we host psychosocial and support programs for young adults facing cancer, but it’s always been important to me to figure out how to get what’s needed most into the hands of young adults with cancer.

With that in mind, have you heard of Mend Together? They are a platform where you can organize what you need with your family and friends into a gift + cash registry. Think the knot or amazon wish lists but even better because Mend Together is specifically designed for cancer patients and survivors.

It’s so hard sometimes to respond when well-meaning family and friends ask, “How can I help?” Especially when sometimes you just really need a specific kind of toothpaste to help with dry mouth, a pair of cozy socks for the infusion room, or maybe just Tuesday night dinner. Mend Together is a free platform that helps organize exactly what you need. You pick the items you need and add them to the registry. They even have tools on the platform that help others learn what to say and do for someone facing cancer! Mend Together includes a gift + cash registry, community journal, and volunteer calendar.

If you’re interested in setting up a registry, use the code LACUNA100. That will get you a free Cancer Support Kit that includes free gifts, resources, and a $100 in-site credit to use on Mend Together’s products and services. Mend Together will also donate $20 to Lacuna Loft to help support our mission and programs.

How does it work?

Patients/Survivors of a friend/family member can create a free registry and add over 300 products, services, and cash funds to it as well as send updates to loved ones. Friends and family can then choose a gift to send, contribute funds for financial assistance, send encouraging words, or donate time.

Learn more about how to help people rally around you when you need them most using Mend Together.

Join A Focus Group + Be Heard!

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Are you between the ages of 26-35 and have been diagnosed with ALL or AML? We’d love to chat with you!

Join a focus group, hosted by Lacuna Loft, Elephants and Tea, and Servier Pharmaceuticals. Servier is looking to speak with 15 young adults facing cancer, ages 26-35, about your survivorship. The good, the bad, and everything in between. Better understanding your survivorship challenges will help Servier better innovate in their creation and delivery of cancer tools and resources.

The group will be focused around ALL and AML survivors but young adults facing other diagnoses may also attend. The focus group will take place on Feb. 10th or Feb 11th. 5-6:30 pm PT / 7-8:30 pm CT / 8-9:30 pm ET.

Each focus group will bring together 5-10 young adults facing cancer for a moderated discussion over 2 hours. The discussion will happen over Zoom so you can be comfy and cozy at home for the whole thing. You will be compensated for your time and energy because your voice and perspective are so important in the delivery of cancer survivorship resources.

Sign up below to join the discussion today and offer your voice!

Have questions?  Email mallory@lacunaloft.org.

Opening The Conversation: Join A Research Study!

Young adult survivors of breast and gynecologic cancer face a number of challenges, including interrupted life plans.  As many as two-thirds of these young survivors experience negative effects of cancer and cancer treatment on their reproductive health, including sexual function and ability to have children.  These are among the most distressing aspects of life after cancer for young survivors and their partners, and when left unaddressed, lead to poorer mental health and quality of life.  Effective communication and coping are important for couples struggling with reproductive distress after cancer.  Through their research, scientists at Oregon State University learned that many couples encounter significant challenges when faced with the reproductive and sexual health consequences of cancer.  Yet, surprisingly, evidence-based programs are not available to help young couples manage this aspect of life after cancer.

These researchers are looking to adapt an existing program so that it specifically fills this gap. To do this, they will incorporate advice from young survivors, survivors’ partners, clinicians, and researchers.  The new program will focus on fertility/family building and sexual health concerns after cancer, be tailored to meet the needs of young adult breast and gynecologic cancer survivors and their partners, include information about strategies shown to be effective to cope with reproductive health concerns after cancer, and be delivered by videoconference to reach couples living in rural and urban areas.  They will enroll 100 couples in this study to compare this newly adapted program to the original program, which focuses on managing the impact of cancer more generally. Fifty couples will be randomly assigned to receive the new program and 50 couples will receive the original program.

They evaluate whether the new program leads to greater improvements in reproductive and sexual distress than the original program. They also expect to see improvements in other aspects of relationships, sexual functioning, and well-being.  Additionally, they are interested in gaining knowledge about how the program works.  They will study possible mechanisms, including improved coping and communication between couples, using data from both survey questions and interviews.  Researchers expect this study to yield a feasible and effective program to reduce reproductive distress, which will lay the groundwork for making this program available to a wider audience in real-world settings.  In the long term, this is expected to improve equity of access to information and supportive care for young survivors and their partners.

Help create a program for young couples dealing with reproductive and sexual health concerns after cancer! Get $20 for sharing your opinions during an interview. Find out more at health.oregonstate.edu/oc

GABFEST IS NEXT WEEK

Did you know…that GABFEST IS NEXT WEEK!  We’ve teamed up with Elephants and Tea, taken the greatest pieces of an in-person survivorship conference, brought it online, and spread it out over the next week.

Throughout the week of December 7th, we invite you to share, explore, and learn as we interact together.  You are the expert in your own care, so along with experts in the fields, Gabfest will combine and elevate the individual voices of the young adult cancer community.

We have a great agenda lined up, fabulous opportunities for learning and connecting, a raffle each night (more on that at our opening welcome), and more!

Learn more and sign up here!

Stupid Cancer’s Pushing Past Cancer: Stronger Together

Interested in a one-day survivorship conference, offered online and *this* weekend?  Stupid Cancer, UC Davis Health, and UCLA Health have you covered!  They’ve partnered on a free, one-day virtual event for the AYA cancer community.  Join in on Saturday, December 5, 2020 for important information and plenty of opportunities to chat and connect with your peers.

After a long and difficult year, it’s more important than ever to gather our adolescent and young adult cancer community together.

Learn more and register here!

Hodgkin Hub: Empowering the Hodgkin Lymphoma Community from Diagnosis Through Treatment

In the patient community, personal stories from people who have faced a similar cancer diagnosis have the power to offer invaluable insights, support and connection to others who may be starting on this life-changing journey.

Over the last several years, Seagen heard from many people living with Hodgkin lymphoma who shared that they wanted to know more about what to expect after their diagnosis, including how to navigate making difficult treatment decisions and getting through their treatment. To meet that need, in 2018, Seagen created Hodgkin Hub – a dedicated online resource for people impacted by Hodgkin lymphoma seeking information and support before, during and following treatment.

Visitors to Hodgkin Hub can find information and resources about Hodgkin lymphoma, and also watch real patient videos, providing a chance to hear directly from others who have been diagnosed and learn how they navigated their own journeys.

Two highlighted video series includes:

“Day in the Life” Stories

The “Day in the Life” videos highlight individual perspectives from Hodgkin lymphoma survivors on their day-to-day experiences through diagnosis, treatment, and life after. Visitors can hear from:

Kyle: A member of the U.S. military, Kyle was diagnosed with Hodgkin lymphoma after returning from his deployment in Afghanistan. Watch here.
Piper: Diagnosed during her sophomore year of college, Piper learned the importance of self-advocacy and asking her doctor questions about her treatment to get the answers she needed. Watch here.
Liz: As a young adult, Liz was diagnosed just as she was starting college and leaned on her support system of her parents and brother to help her through her treatment experience. Watch here.

“What the HL?!” Survivor Stories

The What the HL?! videos feature Hodgkin lymphoma survivors who talk about the questions they asked (or wish they had asked) after diagnosis. Each provides their perspectives on navigating diagnosis, overcoming treatment challenges and finding support during life with Hodgkin lymphoma. Visitors can hear from:

Sarah: Diagnosed while still in high school, Sarah found it challenging to continue her education while going through treatment but kept a positive outlook. Watch here.
Bryan: Bryan was first diagnosed when he was in graduate school and working full time. His support system was there for him as he faced mental struggles and needed help as he prepared for treatment. Watch here.
Philomina: After being diagnosed with Hodgkin lymphoma, Philomina became an advocate for herself, researching her diagnosis and treatment options. She maintained a strong relationship with her oncologist by asking questions and requesting more information when she needed it. Watch here.

Visit HodgkinHub.com for more information and resources for the Hodgkin lymphoma community.

This post was presented by Seagen.

Supporting Lacuna Loft In A Crafting Night

Join Lacuna Loft for a night of fun and crafting, making monogrammed ceramic coasters led by our Chief Program Officer, Aerial Donovan.  When you can’t join a paint and sip in person, we’ll bring the fun directly to you!  Grab a friend and join other Lacuna Loft supporters online for a chance to directly support our programs for young adult cancer patients, survivors, and caregivers while also creating fabulous monogrammed ceramic coasters.

After making your contribution toward the event we’ll send you everything you need for the event in the mail!

Join us on Monday, November 30th at 5 pm PT / 7 pm CT / 8 pm ET for a 2-hour Supporter Crafting Night.

Go here to grab your ticket today!

 

Donor Space: Welcome!

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Hello!

Lacuna Loft is always looking for new and creative ways to connect with our program participants and supporters.  We LOVE transparency, showing off our behind-the-scenes, and bringing you into our space as much as possible.

In that spirit, welcome to a brand new blog series, The Donor Space!  Whether you’re a donor, a volunteer, a program participant, a supporter, or just generally in our corner, you are welcome here!  We’ll answer questions, show off what’s happening in our programs, bring you into our offices, mix it up with blogs and video, and generally open up the doors to our virtual space in a brand new way.

I’m excited to spend time with you here!

 

 

 

 

 

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Teens&20s Is Launching And They Want To Hear From You

person at desk developing infographic

Our friends on the Together team at St. Jude Children’s Research Hospital are pleased to announce the launch of Teens&20s, a mini-site for teens and young adults who are childhood cancer patients and survivors.  Together needs feedback to help make Teens&20s the best it can be.  If you are a cancer patient/survivor age 13-25, please spend some time checking out Teens&20s and then take an anonymous survey by October 13.  While supplies last, participants who complete the survey will get a $10 gift card.  (Participants may choose from a variety of major retailers.)  Together is a comprehensive online resource for pediatric cancer patients and their families no matter where the patient receives treatment.

Check out the survey here!