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2017 Top-Rated Nonprofit

ICAN, International Cancer Advocacy Network

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Nonprofit Overview

Causes: Cancer, Health, Philanthropy, Private Independent Foundations, Technology

Mission: ICAN provides Personalized Medicine Cancer Case Management Programs, through its customized patient advocacy services, to Stage IV patients who urgently need new therapeutic options to consider. The organization specializes in complex and rare diagnoses, whether pediatric or adult cancers. ICAN, given years of experience with oncology issues and the anticancer drug pipeline, assists patients in the battle to extend life with high quality of life through physician referrals, cutting-edge information and advocacy services, clinical trials research, pre-approval access or "compassionate use" analysis, molecular profiling services, and palliative care program services. ICAN has been profiled in Newsweek based on the still enduring complete remission of one of its breast cancer patients and in Pharmaceutical Executive Magazine (where ICAN was viewed as the exemplar of cancer patient advocacy--out of 5000 organizations to choose from). ICAN has also been featured in the Robert A. Nagourney, M.D.'s pivotal book "Outliving Cancer" and is featured in the biography of anticancer drug discoverer G. Robert Pettit, PhD.

Results: ICAN is leading the international multi-stakeholder coalition, the Exon 20 Group, which consists of the world's leading thoracic oncologists and physician-scientists as well as patients, caregivers, pharmaceutical and biotech companies, academic medical center and commercial lab molecular pathologists, and exon 20-focused scientists. The Exon 20 Group represents patients from 17 countries. We are following each patient in the Group, insertion sequence by insertion sequence, and providing Molecular Tumor Board services (as we do for ICAN solid tumor patients with complex cases) at no charge to patients who are progressing on exon 20-specific agents. Because we are following patients so closely in not only exon 20 trials but other trials for our other solid tumor/blood cancer patients, we are able to provide study teams with important insights. We are also able to advise the biopharma community about protocol amendments and improved trial design in what all stakeholders understand to be a dynamic and challenging area. As a general matter regarding the "metrics" discussion, when one is dealing with individual cancer patients and their specific cases, the metrics are extending time to progression and disease-free survival in addition to patient-reported outcomes on management of side effects and quality of life issues. The metrics question becomes "compared to what?" since no cancer patient is like any other cancer patient. The one metric that counts at ICAN is an overwhelming number of our patients, given the countless accolades we have received over the past 22 years, testify to ICAN's pivotal assistance in making a critical difference in life prolongation and quality of life issues. On the metric of "Was there a stone left unturned in the patient's journey with cancer?", our ICAN patients and their families resoundingly answer "No" year after year.

Target demographics: Metastatic cancer patients, especially those with rare cancers or unusual presentations of commonly-diagnosed tumors or blood cancers

Direct beneficiaries per year: More than 600 patients and caregivers, including more than 60 patients from 17 countries dealing with a rare lung cancer mutation. Our legislative and policy work has helped patient-physician communications and assisted clarity in the biologics and biosimilars area as well as improved patient access and patient-physician-pharmacist communications for hundreds of thousands of patients across the United States. We also advise fellow patient advocates on advocate-health regulatory approval issues abroad.

Geographic areas served: All states in the U.S. as well as 54 countries

Programs: Personalized Cancer Care Navigation Programs Remission Coach Advocacy Programs Health Care Information Technology Initiatives Legislative Advocacy Programs Linda Jenckes Health Care Policy Program Clinical Trials Enrollment and Retention Tracking Program Exon 20 Group--for all solid tumors diagnosed with exon 20 insertions Named Programs (named by grateful patients or their families), please see http://www.askican.org/namedpat.html

Community Stories

185 Stories from Volunteers, Donors & Supporters

Volunteer

Rating: 5

ElenaG

I have been working as a virtual volunteer with ICAN, and I am also a patient. ICAN is well-organized, and all people I dealt with in this organization are committed to doing excellent work and helping cancer patients. Marcia Horn is always available to help with any questions regarding to find a cancer treatment and/or side effect management. She is a very dedicated, committed person, very quick to respond to questions and concerns.
I always feel her warm attitude and personalized approach, and she is very competent in giving information regarding any of my requests or concerns. I wouldn't hesitate to recommend the services of ICAN to the patients who deal with Cancer, as it can help to save tons of efforts and time to find a proper treatment or resolve an issue.

Client Served

Rating: 5

Very thankful for this wonderful organization. Marcia Horn and her team have been instrumental in educating and guiding me in the options available for treating my EGFR Exon20 insertion mutation. I was diagnosed in December, 2014 with Stage 1A adenosquamous lung cancer. Had a lobectomy initially and things were good for just over a year. About 15 months later the cancer had metastasized and I subsequently had brain surgery, Gamma Knife radiation and a liver resection. Each time the cancer had been 'isolated' so surgery was an option. Six months after the last surgery, there was progression and I underwent 5 cycles of chemotherapy and could not tolerate the treatment. In search of other options, it was ICAN that was influential in my decision to pursue a Phase 2 trial in Houston. I started the trial in September, 2017 and after some tumor "shrinkage", I remain "stable" at this writing and actively continuing the trial. ICAN is a truly dedicated and extremely helpful organization.
Phil Lindquist
EGFR Exon20 Patient

Professional with expertise in this field

Rating: 5

I had spent significant time researching treatment options for my husband's EGFR Exon20 lung cancer. I found ICAN through an established connection with another lung cancer caregiver searching for options for his loved one. I decided to contact ICAN to find out what additional information or guidance may be available. It was the best call I made! I spoke with Marcia Horn whom, I knew after speaking with her for 10 minutes, was the real deal and understood where we were in the disease process and that we were hoping to find any and all options that may be available. I had a little knowledge of the existing trials and after speaking with Marcia, I had a much deeper understanding and someone who could answer my questions and provide guidance on which to pursue and when. It is because of Marcia and ICAN that we ended up with a "3rd" opinion and decided to pursue the most promising trial for Exon20 insertion mutations at MD Anderson. My husband is now in his 10th cycle of the trial and we continue to rely on our partners at ICAN, along with our doctors, to help keep us current on any additional treatment options for the rare EGFR Exon20 insertion mutation. Marcia and her team work tirelessly to advocate for the patient. I am very grateful that I made that phone call and highly recommend her and the ICAN services to others. -Paula Hockster

General Member of the Public

Rating: 5

When a loved one gets a cancer diagnosis, the anxiety, the many questions, and the fear can all be overwhelming. The moment we discovered ICAN, that fear and anxiety quickly became manageable. We are so greatful for this organization, and so greatful to have such a caring team member to help us navigate this difficult journey.

Client Served

Rating: 5

I have NSCLC - Stage 4 Adenocarcinoma with an EGFR mutation - Exon 20. I learned early on that I should be the patient and my wife should be my advocate. My wife found Marcia Horn's name on a blog about Lung Cancer. Someone had raved about Marcia and the ICAN advocacy and my wife decided to email her to ask some questions about possible trials and or treatments. Marcia immediately responded and they set up a time to talk on the phone. I was so impressed with the quick response from Marcia especially in today's world. Marcia is one of the most knowledgeable people on the subject of lung cancer and the available treatments. Marcia invests in people and my wife has tons of information after communicating with her either on the phone or in an email. The World of Cancer can be a difficult one, Marcia has been able to share information at a level that is understood by patients. She will guide you through each step and process and point you in a direction that will best benefit you the patient. Marcia has been a Godsend for my family with her wealth of knowledge. She is a kind and compassionate woman and represents ICAN international very well. This company will make you feel like you are important, and in times of Cancer the struggles are real and the challenges heavy, to have this company and Marcia on your team you are ahead of the game. Thank you ICAN!
Sherm J

Client Served

Rating: 5

When I was diagnosed with EGFR, Exon 20 insertion, NSCLC, I contacted Marcia at ICAN to get advice about what my treatment options were. I knew nothing about the journey that I would be taking. I got her name and email address from an online support group. I gave her a call and expected to hear back from her within a week. She called me back within two hours. We talked about current options for me and a trial that was opening up that I may qualify to participate in. As it turned out, I was able to get into the trial. I have stayed in touch with Marcia and contacted her every time I had a question about my treatment.
Marcia has always been positive about treatment options and given me hope. She has also encouraged me to advocate for Lung Cancer Awareness. She has educated me on the importance of understanding what mutations may be in my cancer. With more knowledge about my individual cancer, the more options that may be open for me in treatment.
In the back of my mind, I always know that I have Marcia to answer questions or give advice to me. It is comforting to know that I have someone to reach out to for answers.

General Member of the Public

Rating: 5

I personally would give 10 stars if that were an option. ICAN International Cancer Advocacy Network far exceeds any expectations I may have had. I came across Marcia Horn's name on a blog and reached out to her. She immediately contacted me and we spoke for quite some time on the phone. I felt that she genuinely cared about my husband who was diagnosed with a Stage 4 lung cancer with a rare EGFR mutation. We were at UCLA with my husband on an immunotherapy and had had severe issues and side effects and were looking for information on other options. Not only did Marcia share some options, she made phone calls on our behalf, educated us on the various trials that might be available for my husband and always stayed in touch. She also was able to answer many questions that I had and in a way that I was able to understand. Not only did we feel like we had an amazing advocate we felt that we had made a lifetime friend. I have reached out to Marcia at all hours and was surprised when many times she would respond at what most people would call after hours! Marcia and this organization are top notch and the many people who's lives she/they have touched are beyond blessed.

Client Served

Rating: 5

ICAN has given my family and I strength and hope during a state IV diagnosis. With ICAN in our corner, we know we have the best resources to help us with our journey. We are hopeful and proactive because of ICAN and we are forever indebted to Marcia.

1

Volunteer

Rating: 5

ICAN allows for working alongside renowned experts at the frontier of today's medicine. It is my strong conviction that ICAN's detailed letter of recommendation about me, written by ICAN's CEO Marcia Horn and ICAN's Director of Research Services Regina Marie Klopfer, enabled my offer of admission into my first-choice graduate program. I am also of the strong conviction that their recommendations, with the support of Human Resources Director Andy Young, enabled my job offer as a Medical Coding Analyst at the Indiana Office of Medicaid Policy and Planning. I look forward to contributing what I learned under ICAN as a Health Disparities Research Intern.

Professional with expertise in this field

Rating: 5

For patients and families seeking in-depth and detailed information on advanced (Stage 4) cancer, in all its forms, Marcia Horn, President of ICAN (International Cancer Advocacy Network) is truly an indispensable resource. Marcia and her colleagues at ICAN work on a 24/7 basis to acquire and deliver the most pertinent, intelligent and useful information, guiding patients toward the most promising treatment protocols, whether they are FDA-approved or accessible only through clinical trials.

All questions, from scientifically basic to medically sophisticated, are welcomed and thoroughly answered at a level of complexity that precisely matches the patient or family member. Having collaborated closely with Marcia, I can attest to the fact that the quality of ICAN’s services and information is up-to-the-minute fresh, relevant and actionable. In short, for information and advocacy on advanced cancer, Marcia Horn is at the top of my list.

I am enjoying being involved in the EXON 20 GROUP, co-founded by Kevin Hanlon and Robert Hanlon.

Carey Gold, The Health Advisory.com

1

Client Served

Rating: 5

I felt so alone and confused with assisting my father in his battle with cancer. After a few months of navigating the complicated world of our medical system, I was put in touch through a family friend with ICAN. A month ago my family was faced with the difficult challenge of choosing the best option given to us by our oncologist, including different clinical trials and standard of care. With all options there were pros and cons. The anxiety I felt making such a difficult decision was eased by the support of ICAN. The team at ICAN was more than responsive. They provided us with resources, guidance, were able to shed light on certain treatments that were effective or ineffective based on my father's genetic makeup. This is something that our oncologist should be able to guide us through, but the issue is oncologists are limited to the resources of their institution. Therefore, we were limited to the information we received. We sought a 2nd opinion and they also had different options. When we asked them which option they felt were better including the other institutions', we were met with opposition. Not surprisingly, they were unable to provide any opinions on the other institutions' progress or therapies. Cancer is a complex disease and there is no one method or approach. The ICAN team made me feel like I had an extended family for support and guidance. All cancer patients and their families should seek support from an organization like ICAN. Marcia Horn is an incredible person. She is not only knowledgeable and dedicated, she also has the kindest heart. I am so thankful to have ICAN help me during this time. The network of professionals and volunteers is deep and ever growing. I thank all those participating as a volunteer through ICAN. My family is grateful for your selfless acts of service to cancer patients and community.

Volunteer

Rating: 5

Working with the ICAN and the Golf Tournament Board was very rewarding. The Liberty Mutual Invitational, benefiting ICAN was a wonderful event raising awareness and much needed funds for ICAN.

1

Professional with expertise in this field

Rating: 5

I have volunteered at several organizations but ICAN is the best organization I have volunteered at. They are so very helpful and supportive. Marcia Horn is the best supportive person I have ever met -online-. I do recommend ICAN for the cancer patients and also Med students.

Professional with expertise in this field

Rating: 5

I had the privilege to work at ICAN as a research volunteer to search for the cutting edge research related to all types of cancer. I had a great opportunity to get to know Marcia Horn as I wanted to do more volunteering work at ICAN. She and Regina was so supportive to help me out and to choose what I can do. I very much believe in ICAN and its amazing leadership. I am not enough thanking ICAN for all the great help to the cancer patients. I am giving them the best possible review, because simply they deserve it.

Professional with expertise in this field

Rating: 5

ICAN is a wonderful organization in helping so many cancer patients with referral to the best oncologist across the US. ICAN has a lot of volunteers who searches the databases to find the most recent updates on the drugs or the clinical trials. Marcia Horn, the CEO and President is the best person I have ever known who help and support me as a volunteer in this amazing organization. I strongly support ICAN and Marcia Horn and give them the best of the best 5-stars review.

Professional with expertise in this field

Rating: 5

Participation in Liberty Mutual Invitational is the best!!!! Great organization that serves the under and unserved as well as all in need. Needs more funding to support more patients!!!

Volunteer

Rating: 5

ICAN mounts first class events specifically the Liberty Mutual Invitational and working on golf events is productive, fun, and collegial.

Client Served

Rating: 5

I received a call back immediately, offering a compassionate response when we needed it most!

1

Volunteer

Rating: 5

This is such a great organization - so helpful and passionate to help those in need of Cancer treatments!!

Previous Stories

Volunteer

Rating: 5

ICAN is a great organization that prides itself on taking absolute care of every cancer patient who needs the information and help with treatment of this disease. Not only are they so caring and amazing, they truly seem to take interest in every person and it shows.

Client Served

Rating: 5

ICAN helped me access treatments and specialists that otherwise would not have been available to me