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.
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:
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.
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!
Lacuna Loft is closed today because it is ELECTION DAY! Interested in figuring out where you can vote? Go here!
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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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.
We are reaching out to ask your opinion about a potential change we’re considering for Lacuna Loft. For those who may not know, “Lacuna” is defined as a blank space, an interval, or a gap…what we interpret as a hiatus of sorts. And “Loft” just seemed like a cool place to hang out. Our founder, Mallory, wanted Lacuna Loft to be a safe place where one could come and recover while learning to thrive. Where someone would want to stay a bit, hang out, and learn to live vibrantly during their hiatus.
While we love what this stands for, there have been challenges with the name. People often confuse “Lacuna” with the city name “Laguna” and believe that the organization is a physical place or retreat (“loft”). There is also some confusion when people search for “Lacuna Loft” online as there is a real estate company in Chicago named “Lacuna Lofts.” Issues like this add a level of complication by creating the need to correct, adjust, and explain the name, rather than focus on the support Lacuna Loft provides.
That said, we are considering a name change – a rebrand – that will reinforce our purpose and strengthen our ability to grow and support the community. We would not exist today if it was not for you and your involvement with us. Before we do anything, we want to know what you think!
Please take a few minutes to complete this survey to help us learn more about your experience with Lacuna Loft and your opinions and how we can evolve in a way that will continue to provide meaningful support to you.
Your responses are voluntary and will be confidential. Responses will not be identified by individual. All responses will be compiled together and analyzed as a group. If you would like to take the survey, please do so by August 15th.
I hope you’re staying safe this summer!
Mallory and I wanted to personally let you know that Lacuna Loft will be having a lighter program offering over the month of August. We’ve got some pretty amazing things in the works and while we’ll be reaching further into the young adult cancer space, we’re very excited about getting back to you this Fall with more wonderful programs.
What do we plan on doing for the next 31 days? Trust us, it’s not a vacation 😉 It’ll be business as usual over here as we strategically plan, grant write, program plan, evaluate, dream, network, and talk young adult cancer survivorship to anyone who will listen! We’ll also be planning some awesome collaborative events with a few of our favorite non-profit partners that will be happening after we get back! (We’re REALLY excited about that- our lips are sealed though, so stay tuned!)
Don’t’ worry! While we’re busy behind the scenes, you’ll still be able to participate in:
In the meantime, we’d love to hear from you! Feel free to email info@lacunaloft.org and tell us anything! From what new Yummly recipe you’ve tried out, to who has sells the most comfortable mask, to what Pinterest fails (or wins!) you’ve been up to creating this summer! It could even be what you want to see more of at Lacuna Loft, we want to hear it all!
Have a wonderful August and we’ll see you in September! 🙂
With the world in constant flux, Lacuna Loft has decided to open our virtual doors and bring as many people inside as we can! In that spirit, we’re inviting your friends and family to a Give One, Get One Event!
So, how does it work? Lacuna Loft runs free, online supportive programs for young adult cancer patients, survivors, and caregivers (that’s you guys!). Our programs are unique in the support they provide, the connections they create, and the measurable, positive patient outcomes we improve. Our programs have been shown to improve quality of life for young adult cancer patients and survivors.
But you know what else? They’re fun!
Now, anyone can join one of our online Give One, Get One Events, experience a program just like our courageous survivors do, and pay it forward at the same time. For every person who takes part in an online Give One, Get One Event, they’ll support a spot in another online program for a young adult cancer survivor!
Get a spot in a fun, creative program at Lacuna Loft and Give a spot in another workshop to a young adult cancer survivor!
Would you mind sharing the word with your family and friends? We have several Give One, Get One Events already scheduled! Send them here to learn more and to give one and get one!
Another day, another research study looking for YOU to answer their questions and help make care better for other young adults facing cancer!
The purpose of this study is to explore how a cancer diagnosis as a young adult influences quality of life, specifically looking at factors related to work and education, such as work-related goals, in addition to factors such as mood, fatigue, cognitive health, work ability, and financial health.
Participants are eligible if they are currently between the ages of 20-44 years old and were:
• diagnosed with a hematological cancer (a leukemia or lymphoma) between the ages of 20-39;
• diagnosed within the past 5 years;
• working or in school during the time of your cancer diagnosis;
• and are no longer receiving chemotherapy or radiation.
Participation in the study involves:
1) an online survey about quality of life, work-related goals, mood, fatigue, cognitive health, work ability, and financial health (approximately 30 minutes); and
2) a phone interview (approximately 45 minutes).
Following completion of the interview, participants will receive a $50.00 Amazon gift card.
Please contact Lauren Ghazal, MS, FNP-BC at lvg220@nyu.edu if you are interested in participating.
