The Nerdery - Overnight Website Challenge

Chicago 2014, April 12-13

The Colon Cancer Alliance for Research & Education for Lynch Syndrome

Paired with WiFi Pizza Machines

The Colon Cancer Alliance for Research & Education for Lynch Syndrome (CCARE Lynch Syndrome) is leading the fight against Lynch syndrome through advocacy, education and research. Lynch syndrome is a genetic disorder that dramatically increases an individual's risk of developing many kinds of cancer, and it is the most common hereditary cause of colon and uterine cancers. People with Lynch syndrome have a 50% chance of passing it on to their children, and tend to get cancer much earlier than individuals without the gene.



When someone knows that they have Lynch Syndrome, they can take active, life-saving steps, such as early detection testing beyond what otherwise would be recommended. Therefore, in collaboration with Dr. Henry Lynch, health care professionals, Drs. Neil and Sharon Perlman, founded CCARE Lynch Syndrome to increase awareness and save lives.



Women with Lynch syndrome have an increased risk of uterine, ovarian and breast cancers. CCARE Lynch Syndrome collaborates with national non-profits dedicated to women's cancers and founded World Lynch Syndrome Gynecologic Cancer Awareness Day, which will take place on September 18, 2014.



CCARE Lynch Syndrome collaborates with the University of California - San Francisco Kintalk to produce educational materials. The all-volunteer organization provides community and professional educational programming and presents at national professional conferences. For example, Dr. Perlman will be lecturing at the Society of Gynecologic Nurse Oncology Symposium in San Diego on April 2-4.



Supporting emerging Lynch Syndrome research, the CCARE Lynch Syndrome Research Award is presented yearly at the Society of Gynecologic Oncology Annual Meeting on Women’s Cancer.



What new functionality we are looking for

A user friendly, visually appealing website that will allow CCARE Lynch Syndrome team members to easily update the content.

A form field for donations and memorial tributes



A form field for program registration



A blog



Prominently feature icons for Facebook, Twitter, and e-mail sign up



A rotating picture area to feature upcoming programs, cancer facts, and emerging research



An enhanced page to highlight and link to our partners



An updated look so everything is not posted in one centered column

How the new functionality will help

We have great passion and expertise, but we are limited because of the limited use of our current website.



The ability for team members to easily update the website is particularly important because there are constant new developments that need to be quickly reflected on the website, to make sure that our material is not outdated. We need to effectively post groundbreaking research, list current protocol for health care professionals, and spread the word about hereditary cancer. If people have never heard of it, they can't take steps to identify cancer at the earliest stage possible.



Making the website user friendly and visually appealing is crucial as well,because the topic is dry and technical, and we want our website to reach people who have no medical background.



How our organization will use the technology

Who will use the technology

21 Messages from Supporters

2014-03-14 03:36:24 UTC
Joanne Oppenheim

CCARE is educating people about Lynch syndrome. History has shown that there are many people who have possibly had Lynch syndrome but did not know. If there is a family history of certain cancers at a young age CCARE is teaching people to be tested. This will only save lives. Hopefully not too many years from now, many families will be thanking CCARE!

2014-03-14 14:56:55 UTC
Irene Caminer

Like Joanne I agree that CCARE is educating people about Lynch syndrome. History has shown that there are many people who have possibly had Lynch syndrome but did not know. If there is a family history of certain cancers at a young age CCARE is teaching people to be tested. This will only save lives. Hopefully not too many years from now, many families will be thanking CCARE!

2014-03-14 15:03:59 UTC
Adriana Reyes-Villanueva - CCARE Board Member

I am convinced that CCARE is providing both patients and medical providers lifesaving information that they would not easily come across on their own. I truly believe that expanding the reach of CCARE's message will increase the odds of people with a family history of early cancers being identified early and receiving appropriate counseling, advice and treatment from their medical providers. Knowledge is truly power and so is teaching people to ask the questions that lead to that knowledge. CCARE does both.

2014-03-14 15:24:32 UTC
Janice Moskowitz

Website support will help the Colon Cancer Alliance for Research & Education for Lynch Syndrome (CCARE) more effectively execute its mission to enhance education, advocacy and research for Lynch Syndrome. Lynch Syndrome, though relatively common, is sadly often overlooked as a major contributing factor in familial cancers. CCARE is working to change this and to ultimately improve and saves lives. Please support CCARE.

2014-03-14 15:37:31 UTC
Janice Moskowitz, Las Vegas, Nevada

Having lost my own sister to cancer at a relatively young age, I understand the devastation familial cancers cause and am therefore a proud supporter of CCARE.

2014-03-14 16:03:44 UTC
Georgia Hurst

Fightlynch.org (CCARE) is a stellar, highly reputable medical resource for those afflicted with Lynch syndrome and the cancers which manifest as a result. Neil and Sharon Perlman are to be highly applauded for their remarkable advocacy and outreach for Lynch syndrome awareness.

Any assistance that could be provided to them to improve their relentless advocacy and informative website would be well-deserved and highly beneficial to all of us who suffer from this heinous syndrome.

Warm regards,
Georgia Hurst
Founder of Ihavelynchsyndrome.com

2014-03-14 17:39:35 UTC
Kitty Sehon

I wish I had known about CCARE when we first found out about my Lynch Syndrome. I am blessed to have found such an amazing resource and support. So far, everyone in my family that has been tested for Lynch but one has tested positive. I am glad that we all have support and advocacy through CCARE. I know that we can find any answers to our questions here and what we don't find, I know they will help us to find the answers.

We love the CCARE logo so much that my three children and I have all had it tattooed on us!

2014-03-14 21:43:34 UTC
Lila Weiland

Kudos to Drs. Sharon and Neil Perlman for creating CCARE! As a volunteer and donor, I am thrilled to see this organization grow. The importance of educating the public as well as professionals about Lynch Syndrome and the ability to save lives through CCARE is immeasurable. As the word spreads, more and more people are realizing the genetic connection and turn to CCARE and their health professionals to guide them in preventing this disease and treat those that are effected by it.

2014-03-15 02:48:46 UTC
Sarah Kimber, M.D.

I joined the board of directors for CCARE because of the devastating effects that Lynch Syndrome had on a friend's family. Hopefully an enhanced website will help get the word out to medical professionals and the general public. With education and cancer screening, many lives can be saved!

2014-03-15 03:37:40 UTC
Eileen Kavin

CCARE provides an essential service to the public and professionals through communication and education. An enhanced website will further the goals and mission to continue to increase Lynch Syndrome awareness and will benefit many families well into the future.

2014-03-15 05:29:29 UTC
Maria Ostling.

As a family still going through the testing process, CCare is at the top of the list for me to send family to for information. I refer others to the sight knowing they will get the newest most reliable information to be found. There is so much we do not know about Lynch Syndrome, it is wonderful to have one place to go when looking for information or resources.

Maria Ostling
Denver, Colorado
Lynch Syndrome Patient and Patient Advocate.

2014-03-15 05:39:14 UTC
Jackie Herigodt

This organization has come through with flying colors for Imerman Angels. Whenever we need any assistance, additional knowledge or even connections, we know we can reach out to CCARE. They are an amazing resource and we are so thankful to have them on our side so that no one has to face cancer alone!

2014-03-15 09:38:56 UTC
Kathleen Cordero

My father passed away from a Lynch cancer when I was a teenager. Had we known about Lynch Syndrome, he might have been here to walk me down the aisle at my wedding, or meet my husband and my children. Lynch Syndrome steals our loved ones too early in life. Testing is crucial to our survival. Because of genetic testing, I've been able to see my oldest son walk down the aisle at his wedding. CCARE is an incredible resource for us. It puts the information at our finger tips. There aren't too many resources available for us, and having an updated, user friendly site is critical. Kathleen Cordero, Brandon, FL, Lynch Syndrome patient and advocate.

2014-03-15 11:12:25 UTC
Jo Pyle

As with any medical issue early detection and useful resources are always essential. As a friend of a cancer survivor I fully support this website as a tool of great interest and information. CCARE has created a meaningful way for both patients and family to reach out and find answers. In support of all those we love!

2014-03-15 13:14:57 UTC
Christa Cordero

This site allows family to stay up to date and to discover more about lynch syndrome. Communication is key and I am grateful my loved ones have this resource.

2014-03-15 16:00:21 UTC
Mel Gish

Thanks for saving my best friend Kathleen Cordero. She is precious to me.

2014-03-15 16:47:23 UTC
Stacey Rubin Silver

The CCare founders are bringing much needed attention to lynch syndrome. Information will empower the medical community and those at-risk to take the steps necessary to prevent pre mature death. The CCARE founders are invested in the education and organization that a carefully designed website can offer the cause.

2014-03-15 18:32:45 UTC
Tera Shook

Lynch Syndrome is severely under-diagnosed. Estimates in the United States is that more than 800,000 people have it but sadly only 50,000 are diagnosed. With the awareness that CCARE could bring with a revamped website those numbers could be reversed. Saving lives with early screenings.

Tera Shook
Lynch Syndrome
Aurora Colorado

2014-03-16 02:01:16 UTC
Linda K Warner

Lynch Syndrome is such a comprehensive cancer genetic disorder.Most of us were diagnosed because of experiencing disproportionate amounts of cancer deaths in our families. Many specialty physicians are involved in each Lynch Syndrome patient's care, whether the person has cancer or not. Early detection is our only way to stay alive and cancer free. A comprehensive website that keeps us abreast of all the latest research and medical evidence of how we survey for these cancer will save lives. Many patients are unable to access or afford subspecialty treatment. Particularly people in more rural areas. The primary care physician will admittedly need help from the Lynch Syndrome patient in keeping on top of what we need to do to protect our health. An awesome, multilevel website will save lives!

2014-03-16 13:51:13 UTC
Judy M

Although I have not had colon cancer, I have had endometrial cancer, surgery and radiation. I'm a seven year survivor!

My "issue" with the medical community is that when I was diagnosed with endometrial cancer I was not asked about family health history other than my mother (breast), my father (stomach), and my siblings (a brother who had colon cancer at age 31 and again nine months later.)

If they had asked about grandparents, uncles/aunts etc., I would have said: and uncle died at 26 of colon cancer, my grandfather died at 34 of colon cancer and one hour earlier his father had died of stomach cancer.

I regret that I (and my doctors and oncologist) did not know I had Lynch Syndrome. If we'd known that, perhaps my 33 year old daughter would not have had Stage III-C colon cancer three years ago.

2014-03-16 18:05:21 UTC
Brittany Justice

As a newly diagnosed 28 year old mother of two, having access to the latest greatest information could be life saving. A user friendly format would be appreciated. CCARE is my first choice to go to when I have a question.

Brittany Justice
Lynch Syndrome Previvor
Fort Collins, Colorado

Our Mission

CCARE Lynch Syndrome is leading the fight against Lynch Syndrome through education, advocacy and research. Our 501c-3 non-profit is dedicated to educating health care professionals & the general public about Lynch Syndrome, a genetic disorder which greatly increases cancer risk, especially colon and uterine cancers. Through education we increase Lynch Syndrome awareness. That, in turn, results in active steps to identify cancers at their earliest possible stage, significantly improving the life and longevity of affected individuals.