Last week, I had the most phenomenal learning experience at the Project LEAD® Institute. LEAD stands for Leadership, Education, Advocacy and Development. The Institute is a is a five-day science course hosted by the NBCC (National Breast Cancer Coalition) covering the basics of cancer biology, genetics, epidemiology, research design and advocacy. The course was intense, informative, intriguing, and most of all, inspiring (Silver Lining).
Here were our objectives:
- Learn the language and concepts of the science of breast cancer, including cancer biology, genetics, genomics and proteomics, the roles of DNA, RNA, and proteins, and the development of cancer at the molecular level;
- Distinguish between descriptive studies, analytic studies, clinical trials, and meta-analyses, and identify the extent to which each establishes causality;
- Acquire the skills to critically interpret scientific literature, and to become educated about scientific aspects of breast cancer;
- Become familiar with the wide range of consumer advocacy opportunities, and how breast cancer research decisions are made;
- Gain the necessary leadership and advocacy development skills to confidently participate in the scientific community as an advocate.
Yes, it was an herculean effort. And yes, it was worth every single solitary minute. Though my head is still spinning, I feel sooooooo much more knowledgeable about FBC and empowered to help end the f-bomb disease (I forgot how FBC really brings out the f-bombs in me!).
The week was also a great opportunity to learn about the NBCC. I must admit that prior to this experience, I wasn’t all too familiar with NBCC. NBCC advocates have lobbied Congress every year for annual funding since they helped bring about the Department of Defense Breast Cancer Research Program. Since its inception in 1993, that program has been appropriated nearly $3 Billion (with NBCC advocates’ help) for innovative and high risk/high reward research which involves advocates at every step of the way. Boy, oh boy, am I ever f-bomb impressed. Their mission is to END breast cancer by January 1st, 2020. This mission is very very real and very serious. According to the NBCC:
We need something more than hope. We’ve set a deadline of January 1, 2020 to end breast cancer. Hope is a wish. The deadline is a commitment.
The #1 Priority is the Accelerating the End of Breast Cancer Act, a/k/a H.R. 3067. This bill focuses on identifying strategies for the primary prevention of breast cancer and identifying methods to prevent breast cancer metastases.
Part of the Act is the creation of the Commission to Accelerate the End of Breast Cancer which will be comprised of the best minds in biomedical research, business, breast cancer advocacy, and other disciplines. The Commission would be tasked with identifying promising opportunities and ideas in fundamental, translational, and applied sciences and epidemiology not currently being prioritized by the public and private sectors, but which hold true promise in ending breast cancer once and for all. How amazing and Silver Lined is this? I mean, really.
What can YOU do? Well, check out this list to see if your representative is a co-sponsor of the Act: http://www.breastcancerdeadline2020.org/what-we-do/policy/co-sponsors-of-hr-3067.html
If your representative is NOT on the list, then click HERE to send him or her an email request to join the list of co-sponsors.
One thing that I learned for sure: each and every one of us can make a difference. Super cool. Super inspiring. Super Silver Lined.
Over the next few weeks, I am so excited to share all of the wonderful things that I have learned (as soon as I am able to process everything!).
Hollye, how wonderful of you to attend the 5-day science seminar by the LEAD Institute, sponsored by the NBCC. NBCC's mission to end FBC by Jan. 1, 2020 is inspiring and challenging. I look forward to your sharing more of what you learned while there.
I love this quote from NBCC: "We need something more than hope. We’ve set a deadline of January 1, 2020 to end breast cancer. Hope is a wish. The deadline is a commitment."
Thanks so much for your note, Carolee! I love that quote too!
Hi Hollye. I've been following the NBCC for a while on Facebook. I found out about them on Twitter. It must be exciting as a nurse and a woman who had FBC to be a part of this organization. I like the idea of a deadline. It means to me, no playing round. We're going to accomplish this goal.
Wonderful, Lynn. Thanks so much for your note! I couldn't agree more about the idea of the deadline. I couldn't agree more!
Hollye, It was wonderful to have you at NBCC's Project LEAD Institute. Just wanted to clarify something important. NBCC advocates have lobbied Congress every year for annual funding since we helped bring about the Department of Defense Breast Cancer Research Program. Since its inception in 1993, that program has been appropriated nearly $3 Billion (with NBCC advocates' help) for innovative and high risk/high reward research which involves advocates at every step of the way. Looking forward to your upcoming blogs!
Dear Annette,
THANK YOU for your clarification! I have made the change in the post…
Thank you also for an amazing week. Everything about it was WOW!!!
Best,
Hollye
Hollye
Sounds like it was an intense five days. Looking forward to hearing more about it. Thanks for being there. Thanks for sharing.
It was indeed, Nancy. Intense and informative and inspiring! Thanks so much for your comment!
I have another question. Within the last 18months I lost my husband to cancer and became a breast cancer stage 3 survivor. My children have told me I have changed but can't specify. The reason I ask is my oldest, my son, doesn't like me anymore. He says I am selfish and self absorbed. That really hurts. He is an adult with a young family.
Dear JoAnn,
Geesh! What a year it has been for you. We all change after this experience. There is not doubt about it.
One suggestion that I have would be to talk with a therapist or your oncology social worker. Having a safe, neutral place to open up and share all of these challenging feelings is really, really helpful! Your son could be transferring grief and loss issues on to you because he doesn't know how else to get his feelings out. At the same time, it's really hard to be on the receiving end of such difficult emotions. All of this to encourage you to find someone with whom you could share your perspectives.
I hope this helps. Please let me know how it goes!
Best wishes,
Hollye