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                                       Renal Medullary Carcinoma- Rare But Not Invisible

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2nd Annual RMC Alliance Meeting

Posted on October 20, 2017 at 2:35 PM Comments comments (1)

The second RMC Alliance meeting took place in Washington, DC at Children's National Hospital. 




VICC helps launch the RMC Alliance

Posted on October 12, 2016 at 8:25 AM Comments comments (2)



"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) 




RMC Alliance

R.M.C. Focus Meeting April 2016

Posted on April 30, 2016 at 8:45 PM Comments comments (0)

                      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. 
















RMC Proclamation 2016

Posted on March 11, 2016 at 7:15 AM Comments comments (0)

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.





Cancerwise, MD Anderson's patient blog #2

Posted on February 27, 2016 at 12:40 AM Comments comments (0)

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

Gabriel's kidney ultrasound results

Posted on December 29, 2015 at 12:20 AM Comments comments (0)

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."



 

 

ACSCAN Leadership Summit & Lobby Day 2015

Posted on October 16, 2015 at 9:00 AM Comments comments (0)

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!     






Bill S.341 Passed!

Posted on May 28, 2015 at 7:45 PM Comments comments (0)

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!!




Cancerwise, MD Anderson's patient blog

Posted on May 13, 2015 at 8:00 AM Comments comments (0)

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 

S.C. State House bill S.341

Posted on March 26, 2015 at 7:40 AM Comments comments (2)

Yesterday was an exciting day at the S.C. State House. Senator Marlon Kimpson sponsored a bill for me and it passed the sub-committee meeting!! If you'd like to watch my testimony feel free to click on the link below. (Bill S.341)

http://www.scstatehouse.gov/video/videofeed.php ;

select the meeting:

Wednesday, March 25, 2015 9:00 am

Senate Medical Affairs Committee -- Medical Affairs Subcommittee on 176, 257, 341, 371, 474, 3204.

 

 

Discussion starts at 36:09

My testimony starts at 39:09

 

 



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