“Genetic Testing in Oncology To Improve Clinical Outcomes”

myoncopath white paper

I’m super excited to share a white paper with you today from MyOncoPath, an innovative company helping cancer patients and their healthcare providers identify genetic testing that could play a role in personalizing cancer treatment plans.  They also provide a hereditary risk assessment for patients and family members with preventative care.  They are a telemedicine clinic working to support patients and healthcare providers!

Genetic testing is one of those things that we keep hearing more and more about but it’s great when a company actually explains a topic’s importance and breaks down all of those clinical-sounding terms!  MyOncoPath has written a white paper doing just those things, entitled, “Use of Genetic Testing in Oncology to Improve Clinical Outcomes in Preventative Care and Personalized Medicine.”

“Hereditary tests are important for patients already diagnosed with cancer, as the results can expose crucial information about the specific, most effective treatments available, the patient’s risk of cancer recurrence, and the risk of the patient’s blood relatives developing cancer.”

Check out the rest of the report!

Want to Make Real Change In 5 Minutes?

telephone booth

Young adult cancer patient and survivor stories and voices are powerful.  When you use your voice to help make change, you are helping yourself and every other cancer patient and survivor who comes after you have better access to support and care.  This morning I got an email from the Leukemia & Lymphoma Society with really important information on how you can, in just a few minutes, make change with your voice in a very tangible way.  It only takes a few minutes to call the number below and they’ve even provided speaking points so you don’t have to figure out what to say by yourself if you don’t want to!  Will you call today?  I did!

Congress is considering an important bill this week that would stop the spread of dangerous junk insurance plans which discriminate against patients with pre-existing conditions. This is just one of seven bills that have been packaged together to protect and expand meaningful health care access and promote affordability for patients.

We have a chance to pass this meaningful legislation and protect patients, and we need your voice with us to convince Congress to act. Will you make your 1 minute call today?

Just dial 1-855-980-5634 to be connected with your representative – a recording will walk you through some talking points, and we’ve also included a script below. When someone at the office picks up, just say:

Hi, I’m [your name], one of your constituents from [your city]. I’m calling to ask my elected officials to stand with cancer patients and vote YES on H.R. 987 to stop discrimination against patients based on pre-existing conditions. The Strengthening Health Care and Lowering Prescription Drug Costs Act will protect and expand meaningful health care access and promote affordability for patients across the country.

[If you want, you can tell them why this issue matters to you and your loved ones.]

It’ll only take a minute, but your quick call will help rein in junk insurance plans.

These plans are meant to cover short periods of time – but they use dangerous loopholes to avoid important patient protections: they often have no limit on cost-sharing, no guaranteed coverage for essential cancer care like prescription drugs and no protection against annual or lifetime limits on care. Without these protections, cancer treatment is often out of reach.

Please call 1-855-980-5634 today to support H.R. 987 and then forward this message to your friends and family and ask them to do the same.

Interested In Getting More Physically Active?

impact study poster

Are you a young adult cancer survivor interested in getting more physically active?

Researchers at the University of North Carolina at Chapel Hill are studying ways to promote physical activity among young adult cancer survivors using Fitbit activity trackers and Facebook. They are seeking volunteers to enroll in a 12-month research study that tests a physical activity program designed specifically for young adult cancer survivors.

If you participate you will receive a Fitbit activity tracker, information about physical activity, a digital smart scale, and access to a Facebook group. You will be asked to complete online questionnaires 4 times and may receive access to a personalized physical activity website. You will receive up to $160 for completion of all study questionnaires and measurements. The entire 12-month study can be completed online.

You may be eligible if you:

— are 18 to 39 years old

— were diagnosed with cancer (excluding non-melanoma skin cancer) at age 18 or older

— have completed cancer treatment

Additional eligibility criteria apply.

For more information and to see if you qualify, please visit http://www.impactunc.org.

Are You A Rural-Living YA Cancer Survivor?

person walking in grass

Researchers at the University of Ottawa are studying the effect that rural living might have on a young adult cancer survivor’s access to participation in health behaviors, including physical education and nutrition, and they are looking for participants!  The study is exploring if receiving 12-weeks of one-on-one personalized health coaching *online* (you knew we couldn’t pass up an opportunity to tell you about an online study!) can help rural-living young adult cancer survivors become more physically active and eat more fruits and vegetables.

Participants will be asked to:
(1) Meet 1 hour per week with a health coach online for 12 weeks
(2) Complete a short online survey at the start of the study and 12 weeks later
(3) Complete a 60-minute one-on-one discussion about the online program, either online, over the phone, or in-person.

Individuals can participate if they:
(1) Completed primary treatment for non-metastatic cancer;
(2) Are currently between 20 to 39 years of age;
(3) Live in a rural area (locations with <35,000 inhabitants);
(4) Are able to move freely without assistance;
(5) Engage in less than 150 minutes of moderate-to-vigorous intensity physical activity per week
(6) Eat less than 5 portions of fruit and vegetables per day (one medium fruit is a portion);
(7) Have access to the Internet and an audio-visual device such as a webcam;
(8) Are able to read and understand English.

If you’re interested in getting more information or participating in the study, contact jenson.price@uottawa.ca or call 613-562-5800 x. 7300

Want to Learn How To Take Advantage of Clinical Trials?

webinar patients rising logo

Join Patients Rising on May 14 at 1pm ET (10am PT) for an informative webinar on taking advantage of clinical trials.  Clinical trials are at the heart of all advances in medicine.  They lead to new innovations in preventing, detecting, and treating disease.  They allow researchers to test new treatments and new ways to use existing treatments.  Clinical trials determine if new treatments are safe and effective.

There are many reasons to participate in a clinical trial.  In this webinar, their panel will help you explore the benefits and risks and how clinical trials can fit into your healthcare plan.  They will explain why you should care about clinical trials, how they work, and potential risks.  They will answer your questions about clinical trials and point you to valuable resources to search for and learn more about clinical trials.

Please join Patients Rising on Tuesday, May 14 at 1pm ET (10am PT)!

Learn more and register here!

Tell St. Jude What You Want To Hear About

people collaborating

A team at St. Jude Children Research Hospital is developing a tool called Together!  It is an online resource for pediatric cancer patients, survivors, and families.  They are currently developing content for teens and young adults and they want to hear from you!  To guide and inform them, they are conducting an online survey of adolescent and young adult cancer patients and survivors ages 13-25.  The survey is anonymous, is open through May 20, and they will use the information and opinions shared to help them create articles, visuals, and videos that will be helpful and informative to adolescents and young adults who are facing cancer.

Check out the survey here!

What do you think are the most important pieces of content adolescent and young adult cancer survivors need?

Come See Us At The YSC Summit!

YSC Summit poster

We’re exhibiting at Young Survival Coalition’s National Summit in Austin, TX on March 8 – 10.  Join us and other young women living with breast cancer for three days of workshops, support empowerment, and mingling with people who get it.  The 3-day conference is focused on education, inspiration, and community building.

Lacuna Loft has exhibited for several years now at the YSC Summit.  It is a not to be missed event!

Register today!

Free Work And Cancer Midwest Conference

workplace table

This free, full-day event is hosted by Cancer & Careers and is open to patients, survivors, caregivers, healthcare/HR professionals (with CEUs!) and anyone else touched by cancer.

Topics include:
Disclosure, privacy & online brand
Key laws such as the ADA & FMLA
Managing side effects at work
Strategies for communicating with managers & coworkers
Looking for a new job
Disability insurance
Health insurance options
…and more!

Location:
Northwestern Medicine Prentice Women’s Hospital
250 E. Superior St., 3rd fl., Chicago

Date & Time:
Friday, March 29, 2019
Check-in 8:30 AM
Conference 9:00 AM
(Breakfast and lunch will be provided.)

Space is filling up fast so register today!

Research! Technology-Related Communication Around Cancer-Related Events

telephone

Researchers at Hunter College in New York City are conducting a research study on technology-related communication around cancer-related events.

What does it involve?

You’ll be asked to complete a questionnaire about cancer-related communication and well-being. The questionnaire should last 30-45 minutes and can be taken on a computer or a cell phone. Optionally, at the end of the questionnaire you can express interest in taking part in the second part of the study which involves self-identifying a member of your social support network and participating together in a cancer-related discussion over Skype with a member of the research team.

You will have the opportunity to voluntarily provide your email address in order to enter a drawing to win 1 of 4 $25 gift cards for completing the questionnaire. If you decide to take part in the Skype part of the research study, you and your social support member will each receive $25.

Who can participate?

Young adults between the ages of 18-39 who have been diagnosed with cancer, as a young adult (at 18 or older) within the past 5 years.

How do I join?

Complete the questionnaire here.

If you would like to learn more about this study contact the study coordinator, Katie Darabos at 212-396-6675 or kdarabos@gradcenter.cuny.edu

Lacuna Loft Featured On The We Have Cancer Podcast

we have cancer podcast interview

I was recently interviewed by the fabulous Lee Silverstein of the WE Have Cancer podcast!  Lee and I had a wonderful conversation about adolescent and young adult cancer survivorship, Lacuna Loft, about my path from being an aerospace engineer to becoming a nonprofit leader, and so much more.  Lee has done so many great interviews so make sure to check out the WE Have Cancer Show website and all of the other great people he’s spoken with.

Check out the interview here!  Let us know what you think!