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2020 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. Implementing ICAN's mission, vision, values, and programs are board leaders who work tirelessly in partnership with staff and a huge global volunteer network spanning multiple time zones. ICAN's Board leadership includes Founding Chair Sidney M. Rosen, Esq., Board of Trustees Chair Sherry Weinstein, Vice Chair Robert H. Tamis, MD, Advisory Council Chair Cathy Dalzell, and Honorary Board of Trustees Chair Cheryl J. Hintzen-Gaines. Marcia K. Horn, JD is President and CEO. ICAN's Scientific Advisory Council is led by G. Robert Pettit, PhD, and Scott M. Kahn, PhD chairs the Biomarkers Council. Robert T. Hanlon, PhD is Co-Chair of the International Corporate Advisory Council and Chairman and Co-Founder of the Exon 20 Group at ICAN. Chuck Clayton chairs the Texas Board of Advisors, and Bob Mazyczek, Barb Rigdon, and Kim Emerson are leaders on the California Board of Advisors (in formation). AJ Brown, Jr. is Director of Health Equities in the Linda Jenckes Health Care Public Policy Program at ICAN. Our Research Services and Global Human Resources are led by Andrew Young and Janet Young. Brenda Berliner handles Special Projects, and Gloria Lu is our Development Associate. Tim Wang is our Director of Graphic Design, and Lynne Cory is our Director of Web Development.

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 EGFR and HER2 exon 20 insertion-focused scientists. The Exon 20 Group represents patients from 40 countries. We are following each patient in the Group, insertion mutation by insertion mutation, 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-specific clinical 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 24 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: Nearly 1400 patients and caregivers, including more than 300 patients and caregiversfrom 40 countries dealing with a rare oncogene now found in 25 separate cancers. 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

223 Stories from Volunteers, Donors & Supporters

Client Served

Rating: 5

I am an unusual reviewer for any nonprofit because I have worn virtually every hat that one can wear in any nonprofit organization.
I started out as a volunteer for ICAN (its former name was IFADD) in 1996 and volunteered at all of the special events that ICAN has held since.
My wife and I became vendors and donors of ICAN and sold art at various ICAN events.
I have also served on the staff and in senior positions on the IFADD/ICAN boards. I never dreamed that I would be an actual patient
of the organization's, but I became a patient in 2006 when I was diagnosed with pancreatic cancer. ICAN was the only member of my team
that predicted I would have pancreatic cancer based on their review of the biopsy findings which had been inconclusive to everyone except ICAN which understood right away the significance of some of the findings. Everyone else thought there might be a structural problem but no cancer. So ICAN, by urging me to get surgery as soon as possible, saved my life. They saved my life again when I recurred with thoracic metastases and counseled surgery.
I remain disease-free thanks to ICAN's constant advocacy services, life-saving information, and moral support throughout.
I have been a pancreatic cancer survivor for six years as of next month.
At every step on my journey, at every turning point, I have been able to rely on the no-holds-barred advocacy services of ICAN.
I have seen up close how this organization wastes nothing and operates on a shoestring yet produces more work than organizations with tens of millions of dollars in the bank. I have seen how ICAN staff with total devotion concentrate on Patient Services, morning, noon, and night, with a work ethic
and a level of productivity that would astound any observer and which leave all other nonprofit organizations frankly in the dust.
If you support any cancer organization, and if you support the strongest possible War on Cancer, I urge you, on behalf of patients like myself, to support this Great Nonprofit. If there is any organization that can help get the majority of cancer patients into stable disease or partial or complete remission, it is ICAN, and they can also help you achieve the highest possible quality of life. I have seen ICAN from every possible vantage point: from the Patient side, the Board Governance side, the Staff side, the Volunteer side, the Vendor/Donor/Supplier side, and this is a nonprofit that operates with the highest integrity and the highest possible productivity and results-oriented and highly energized work environment. This is a very exciting cancer organization to support and to see grow to the next level of accomplishment. Please join me by generously donating what you can and by remaining a donor year after year.

1

Client Served

Rating: 5

Wow! Talk about being available, compassionate, informative, and a ray of sunshine during a dark hour! Thank you for the blessing of your thoughts, ideas, and resources for my family and me.
Nancy Adam

1

Client Served

Rating: 5

ICAN WAS EXTREMELY HELPFUL TO ME AND MY FAMILY DURING OUR DIFFICULT TIME WITH CANCER. THE GREATEST ACCOLADE I CAN GIVE IS THAT ICAN IS ALWAYS AVAILABLE TO HELP.

Client Served

Rating: 5

ICAN 's willingness and ability to assist cancer patients who are in dire situations is absolutely amazing. Marcia Horn , the head of ICAN, has provided extensive support to two of my dear friends, one of whom has mutiple myeloma, and another with head and neck cancer. In both cases, she has used her research expertise and vast knowledge of medical facilities and physicians who are top-notch innovators in their fields to provide my friends with detailed, relevant, and urgently needed information on seeking the best treatment for their cancer. In addition, she has been an advocate when they needed an assertive, knowlegable ally in order to receive prompt, appropriate care. Marcia Horn and ICAN are priceless! They have prolonged the lives of these patients while allowing them to maintain a quality of life that has permitted each of them to achieve a few more of their life goals and fulfill dreams they had believed were impossible after the diagnosis of cancer.

Client Served

Rating: 5

I am absolutely amazed with Marcia Horn and ICAN. My husband is in a late stage of Melanoma skin cancer and is currently going through treatment. We could not have felt more comfortable with the treatment options given to us if it wasn't for Marcia and her team. She is so quick to respond to questions and concerns we have and immediately makes us feel more comfortable about navigating through this deadly disease. I highly recommend ICAN to all cancer patients.

Client Served

Rating: 5

Five years ago I was diagnosed with breast cancer and as often occurs encountered a number of difficulties. I was not sure what direction to take but knew it is important to learn and take initiative as said in Sun Tzu.
"In difficult ground, press on.
In encircled ground, devise stratagems.
In death ground, fight."

I am happy to say that with ICAN, an amazing organization, and with the great resources and assistance from Marcia Horn, the cancer has not returned! Marcia Horn was my expert in defining an amazing oncologist and other areas of direction. I offer my appreciation to her and ICAN and hope that we will never lose their support and direction.

Volunteer

Rating: 5

I have had the honor of working alongside and at the direction of Marcia Horn for some time now. It is simply not possible to be near her and to personally observe the hope and education that she gives those in desperate need, without wanting to help in any small way that one can.

It is not easy to understand Marcia. I have never been close to anyone that did not have a hidden agenda to meet some personal need(s). To graduate at the top of her class at Stanford Law School opened a multitude of doors for personal gain. Instead, Marcia appears to have given her complete life to serving in areas where she sees a great human need not being competently addressed by others. As one example of her selflessness, she is always available, day or night. Her energy level is almost super human.

Marcia’s personal knowledge surrounding cancer (including new developments) is astounding. She is so respected in the medical community that she is on a first name basis with many of the top cancer physicians in the United States.

The big gift that Marcia passes out freely to all in need is hope. I have observed families in despair do a total attitude turn-a-round after just one phone conversation with Marcia. Moreover, she combines being factual with compassion. Patients and families alike truly come to understand what the situation is and what the future could hold. Marcia does not practice medicine, but she is the best coach one could have. She is truly a five star human being.

General Member of the Public

Rating: 5

I am an orthopaedic surgeon and when my dad was diagnosed with stage 4 lung cancer I was lost, all my years of medical training had not prepared me for this. Marcia Horn and ICAN were amazing, not only did they provide us with up to date info on the latest studies, but they were also both uplifting and yet realistic at the same time. I often found them to be more upto date than my fathers own oncologists! I was so impressed by them that I have referred both friends and patients to this group.

General Member of the Public

Rating: 5

I am a friend of a person who has received outstanding support from Marcia Horn's support group. With Marcia's knowledge and experience battling this horrific disease(cancer) my friend has gained her own confidence in her struggle and eventual win in this battle.
No matter what time of day Marcia was contacted she was there to give advice, understanding and personal support at a time when my friend was depressed and frightened, not knowing where to turn for help.
Marcia's organization is serving a very valuable need to very needy people. I applaud her and her group and all their devotion to assist all people finding themselves in this situation.

Volunteer

Rating: 5

I first learned about ICAN while volunteering at an event in 2007. I asked ICAN to help my girlfriend who was diagnosed with Stage 4 breast cancer. They helped her get into a clinical trial, and she is here with us today because of it. I am now going through testing for leukemia and ICAN has been an invaluable resource in helping me find the right doctors.

Volunteer

Rating: 5

I first learned about ICAN in 2005 through a family friend. I was immediately interested in ICAN's mission to assist and empower cancer patients who may not be aware of their treatment options. I got in touch with Marcia, who allowed me to work as a volunteer. During my time as a volunteer, I have helped to recruit and manage interns for the organization, and I have assisted in planning fundraising events. I have also had personal experiences with ICAN, as some of my friends and family members have consulted ICAN with regard to their cancer treatment. ICAN's fundraisers are always impeccably executed. They are truly events to remember. More importantly, the quality and consistency of the assistance Marcia and her team provide to patients is unlike anything I have observed at any other non-profit organization. "Devoted" doesn't even begin to describe it. I cannot rate ICAN highly enough.

Client Served

Rating: 5

Dear all, I have contacted ICAN and Marcia Horn a few months ago when we found that my mother has lung cancer. The next day Marcia wrote me an email with many usefull information I could use about the treatment options, analysis, doctors etc. Ever since, I know I can contact Marcia and Ican for any questions I might have and receive a few hours later the answers I needed. Their activity is really amazing and a real help for us.
Thank you so much for everything you do for the patients and their family!

Client Served

Rating: 5

My husband Don was diagnosed with Stage IV lung cancer when he went in for hip replacement. It was devastating news. Then we heard about ICAN and connected with Marcia Horn. She helped us navigate the reports, kept us apprised of new developments, held our hands and acted as our cheer leader at all times of the day and night. Eighteen months later Don is still going strong and ICAN's positive "you can do it" attitude has made all the difference in this fight.

Shari B.

Client Served

Rating: 5

I was at work when I got the news - my breast cancer had returned to my spine and I was now Stage IV. The Doctors did not give much hope and told me only 16% survive past five years. My girlfriend volunteered at a Jewel of the Ball fundraising event ICAN was holding in 2006 and she decided to volunteer. Little did she know it would change my life.
ICAN called me the very next day at work and reassured me we were going to fight this and it was not gloom and doom. They immediately went into action and referred me to a doctor who helped save my life. I am now in remission over six years and although they won/'t use the word cure, I know I wouldn't be here today if it wasn't for this organization. They truly are the remission coaches of the cancer world and have my support and trust forever.

Client Served

Rating: 5

I reached out to ICAN earlier this year when my father was diagnosed with Stage IV Melanoma. Since we were new to the cancer world, we didn't have much knowledge about the cancer or what all of the treatment options out there meant to us. It was so very scary to us and how could we trust 1 doctor to make the right decisions for my father. I explained all the options we had in front of us to Marcia Horn and she right away eased all of our concerns and worries. We felt good about choosing a treatment plan appropriate for my father after speaking with her. She is extremely knowledgable and was able to provide so much information to us about the drugs, their side effects and effectiveness. She is truly dedicated and always has you in the back of her mind.

Client Served

Rating: 5

Hi I'm Jay C. 38 years old from Cavite, Philippines and I'm one of the lucky cancer (testicular cancer) patient who was readily been assisted by Ms. Marcia Horn. She is a jewel for us who has cancer. She helps us in all the steps to undertake to make us prepared for the challenges ahead. She also makes good advises and serves as my 2nd opinion that guides me well in my cancer treatment. I couldn't thank you more and we are lucky to have and know you.

Keep up the good work and God bless you always. More power!

1

Client Served

Rating: 5

As the parent of a cancer patient, our family is so grateful that there is an ICAN and a Marcia Horn. ICAN, thru the unbelievable efforts of Marcia Horn and her dedicated advisory board and volunteers, is there every step of the way to help when others say there is no hope.

They provide the gold standard for an organization! They are there to help, encourage and give one hope during your darkest days and nights.

We pray that ICAN and Marcia Horn flourish in the years to come and that the day will come that we will no longer need the services of this wonderful organization and it director and volunteers. I know she will cheer along with everyone who works so tirelessly to see that day come to fruition. WAY TO GO ICAN

6

Volunteer

Rating: 5

ICAN is an amazing organization. You have the benefit of working from home and having a great resource in Marcia Horn available to you. Marcia makes certain to provide assignments that are rewarding (based on your interests) and that will help develop your skills. It was my privilege to have volunteered with ICAN and I encourage others to do the same!

9

Volunteer

Rating: 5

In November of 2008, my wife was battling late stage cervical cancer. We were at MD Andersen in Houston being evaluated for a clinical trial when we receieve a referral to Marcia Horn, CEO of ICAN. The person providing the referral told us we could contact Marcia "at any time of the day or night." We were very concerned about our options given the stage of my wife's cancer. We had more questions than we had answers and time was not on our side. Marcia was an incredible savior helping us navigate the plethora of information available while guiding us to an oncologist with unique expertise. Over the final 5 month's of my wife's life, I must have had two dozen or more phone conversations with Marcia. It was not unusual when checking my emails first thing in the morning to have emails from Marcia that were written and sent at 3am. Where can you find such dedication and advocacy? Sadly, my wife lost her battle April 2009. Of my many wishes, I wished we would have been referred to ICAN a year or two earlier. Maybe, just maybe I would still be married to the woman of my dreams.

8

Volunteer

Rating: 5

Since retiring, I have chosen to give back by helping non-profits upgrade their web presence. I started working with ICAN in March of 2009, and I have spent more time with ICAN than any other of the non-profits I work with. This is not because they are difficult to work with -- far from it! Marcia Horn and her cadre of dedicated staff are friendly and appreciative of the volunteer help they get. I spend the time I do with ICAN because of the unique work that they do. There is no other cancer-related organization that does what ICAN does, and I can think of no other organization as worthy of the time I can give them.

8

Volunteer

Rating: 5

Marcia Horn is the expert when you don't know where to go. She knows all the best oncologists and surgeons and is up to date on the latest trials. Her services are needed as she will be the one to help find a cure for this horrific disease.

8

Client Served

Rating: 5

Marcia Horn could not be more helpful with resources and help than anything. I was referred to this organization from another client that knows my sister and am very thankful. I email Marcia every time I need assistance and receive a reply within 2-12 hours each time, which is comforting. I appreciate their assistance each and every time as I know they are very strapped for cash and help. Thanks for allowing me to review International Cancer Advocacy Network and give them 5 stars. Beth Howison bahowison@sbcglobal.net