Renal Medullary Carcinoma- Rare But Not Invisible
|Posted on February 9, 2019 at 3:55 PM||comments ()|
This photo popped up today under "memories" on the RMC Facebook page. To anyone faced with cancer, don't let unfamiliar voices discourage you and tell you that you will not make it. Herman was diagnosed seven years ago and he is living proof that there IS hope! Don't give up!
|Posted on October 20, 2017 at 2:35 PM||comments ()|
The second RMC Alliance meeting took place in Washington, DC at Children's National Hospital.
|Posted on October 12, 2016 at 8:25 AM||comments ()|
"All of us at this meeting have had the experience of young patients who were told they had kidney cancer, were treated inappropriately and usually sent home to die, and then they reached out to us.”
W. Kimryn Rathmell, M.D., PH. D.,
Vanderbilt-Ingram Cancer Center (VICC)
|Posted on April 30, 2016 at 8:45 PM||comments ()|
April 21-23, 2016- Nashville, TN at the Scarritt Bennett Conference Center.
I am extremely honored & humbled to have had the opportunity to be among some of the world's most renowned doctors, to discuss renal medullary carcinoma. A special thank you to Dr. Kimryn Rathmell and Dr. Nizar Tannir for putting this together. Thank you to the William Guy Forbeck Research Foundation, for making all of this possible. I believe through collaborative efforts, we will begin to learn more about the biology of this disease and eventually find a cure.
|Posted on March 11, 2016 at 7:15 AM||comments ()|
On behalf of the R.M.C. Foundation, the Connor family and all who suffer with renal medullary carcinoma, I'd like to take the opportunity to thank Mayor John Tecklenberg (City of Charleston) and Mayor Keith Summey (City of North Charleston) for recognizing the month of March as Renal Medullary Carcinoma Awareness Month. Without the support & recognition of elected officials, the RMC community's daily battle with diagnosis would go unnoticed. With a "limited amount" suffering from RMC, we are at a crossroads in research. By enlisting the support of our elected officials, we ensure the steady growth of awareness. It is with this recognition that we will continue to be successful in raising awareness, educating the public and start toward finding a cure. Thank you for joining us in this cause.
|Posted on February 27, 2016 at 12:40 AM||comments ()|
Check out my second entry for MD Anderson's Cancerwise institutional blog. It features a variety of subjects and it’s published online and searchable. Our story has reached a mother and her son who was diagnosed with RMC and as a result, he's now Dr. Tannir's patient.
https://www.mdanderson.org/publications/cancerwise/2016/01/renal-medullary-carc.html" target="_blank">Blog #2
|Posted on December 29, 2015 at 12:20 AM||comments ()|
If you have sickle cell trait, I cannot stress the importance of getting your kidney's screened on a yearly basis. My youngest son Gabriel and I have sickle cell trait, and every year since my brother's diagnosis I've made sure to request an ultrasound of our kidney's. As Benjamin Franklin said.... "An ounce of prevention is worth a pound of cure."
|Posted on October 16, 2015 at 9:00 AM||comments ()|
I had the wonderful opportunity to attend the American Cancer Society Cancer Action Network (ACSCAN) Leadership Summit and Lobby Day in Washington, DC. We met on Capitol Hill with volunteers from 50 states to ask congress for increased research funding, palliative care and colorectal screening. We are all advocates, and there is no special training involved. One thing I've learned over the past few years, is that small actions create big changes. One person can make a difference, but there is definitely strength in numbers!
|Posted on May 28, 2015 at 7:45 PM||comments ()|
Bill S.341 passed!!! Thank you all for your continued support and a great big THANK YOU Senator Kimpson, for you're leadership in sponsoring this bill!
From my understanding, getting a bill approved in one session is very unlikely. Most bills can take several years before achieving passage and have to get carried over until the following year! I am amazed and humbled by Senator Kimpson's hard work and dedication. This bill is extremely important because it's going to educate parents of this fatal cancer from birth. That means, more parents will begin to demand extensive kidney screenings for their children, which could potentially save a life!!
This is just the beginning, stay tuned for more great things in 2015!!
|Posted on May 13, 2015 at 8:00 AM||comments ()|
I feel very blessed & grateful to have been given the opportunity to share our story with MD Anderson's Cancerwise patient blog. To me, I am just doing what needs to be done for something that I am passionate about. Many thanks to all who continue to support us in this fight.
https://www.mdanderson.org/publications/cancerwise/2015/05/fighting-renal-medullary-carcinoma-with-my-brother.html" target="_blank">MD Anderson blog