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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

1

General Member of the Public

Rating: 5

Without the wonderful professional knowledge and incredible patience from the people at ICAN, there is a very strong chance that cancer would have taken the life of a truly beautiful person in my life this year. The detailed guidance and advice saved her life. ICAN made sure I understood clearly as well. This amazing woman is getting stronger daily. I cannot thank ICAN (and Marcia in particular) enough for everything they did. You saved a very special person's life. THANK YOU!!!

Lila H.2

Volunteer

Rating: 5

In 2012 I was speaking to a good friend about doing something to "give back" to a cancer or human rights organization. Knowing how much I liked to "write" that good friend told me about ICAN. My good friend, Sherry Weinstein, is the Board of Trustees Chair and told me about the wonderful things ICAN and Marcia Horn do for cancer patients and their loved ones. As the parent of a cancer survivor I was delighted to be able to do something - even though it was only writing thank you notes and letters to donors and, occasionally making bank deposits and sending receipts for those deposits. Much has been written about Marcia, who is truly an angel on earth bringing hope to and advocacy for cancer patients in the U.S. and across the world. I'd like to also send kudos to my friend Sherry who, as board chair, is responsible for grant writing, fund development, institutional advancement, board governance and compliance issues, strategic planning and a myriad of other duties. She deals with so much in an eloquent and calm way. My job, and the job of my "co-writer," Donna Stone, is a very small part of what ICAN and its volunteers do on a daily basis to ensure that cancer patients (and their loved ones) have a way to fight for their lives as they face a terrible foe. We all pray for a day when deadly cancers are treatable and manageable illnesses. Because of ICAN this prayer has a hope of becoming a reality. Thank you so much to Marcia, Sherry and everyone associated with this incredible organization. I am proud to be a small part of this group.

Donna S.9

Volunteer

Rating: 5

Having worked with this outstanding organization for several years now I can attest to the fact that those who work tirelessly on behalf of end-stage cancer patients are truly the angels who walk among us. Marcia Horn is the driving force behind the enormous group of dedicated people striving to assist cancer patients and their families while flushing out the gold standard treatment options for all types of cancer..

Sherry Weinstein is the brilliant Chairwoman of the Board of Trustees and The Executive Committee and the best friend anyone could have. She is a wordsmith par excellence and writes grants for funding, manages Board government and compliance, looks forward with strategic planning and is the liaison to the members of the professional council. Her ability to quietly motivate our volunteers with her enthusiasm and drive leaves one in awe. We are so fortunate to be in the orbit of these two amazing women.

Mention also needs to me made of Lila Hauptman wears multiple hats as the person handling receipting, personally written donor thank you notes and whatever additional jobs she graciously accepts as needed.

I am proud to be a volunteer for ICAN. This organization is most deserving, compassionate and relentless in their endeavors to assist patients and their families in the cancer treatment journey.

Client Served

Rating: 5

ICAN is terrific. Her oncologist is the best. And my daughter is well!
From a grateful dad.

Client Served

Rating: 5

After directing a couple of really sick people to ICAN when their doctors were ready to write them off, I was just amazed that their futures took a definite turn for the best. As far as I'm concerned, the brilliant professionals at ICAN saved my friends lives. Thank you, ICAN.

Client Served

Rating: 5

When my father was diagnosed with stage-4 pancreatic cancer, like many, he wasn't sure about the road ahead or what the best options were for survival. ICAN served as an angel on this earth for him, extending his life by 7 years (a tremendous feat considering he had one of the deadliest forms of cancer) with an exceptional analysis of his case at all stages. Many patients are unfortunately lost in a deluge of information when dealing with such a complex disease, and many are unfortunately written off. With ICAN by his side, this did not happen to my father. He was connected with the best doctors for his particular type of cancer and received the best counsel from ICAN during his fight against the disease. I am convinced that without ICAN's support, he would not have lived for so long after his diagnosis.

Client Served

Rating: 5

We almost lost our step-mom to breast cancer because of the wrong chemo protocal for her. ICAN helped us get to, and get an immediate appointment with, a specialist at UCSD in this particular type of cancer and my step-mom was able to work with them to get treatment that both resolved the cancer but also didn't overwhelm her system. I will be forever grateful for ICAN's expertise, network, and caring support when we needed it.

Client Served

Rating: 5

It gives me great satisfaction that my husband's program at ICAN - The Edwin Chesler Esophageal Cancer Patient Advocacy Program - helps so many other esophageal cancer patients. Not only is his memory kept alive with this program, but patients are kept alive as well. Thank you, ICAN.

General Member of the Public

Rating: 5

We learnt about ICAN 4 years ago when my sister was diagnosed with lung cancer. With no knowledge of how to move forward, fears and desperate, we tried to write to Marcia Horn to seek help. Out of our expectation, she made every reply promptly even out of office hours by providing her professional information and advices. It appears to us that she is one of our family members who are ready there to offer her support at all times. She is so understanding, kind and considerate to understand that the patient and family members are in helpless and difficult situation to decide everything to save their beloved's life and need someone to guide along the way. Apart from valuable information and possible alternatives of treatment, she always shows her care and comfort to us to make us feel better and positive on the difficult road ahead.

With some of the adverse effects on the treatment, Marcia introduced Elena Siltanen, the resident pharmacist. We are so impressed on her detail advices on the medication or ways to tackle with the possible side effect including precautions. Again another very kind lady who gives warmth and hopes to the patients and walk along with us to fight in the battle.

ICAN is such a wonderful organization with teams of dedicated members who give their selfless help to those in need. No word can I find enough to thank them for their great support during this difficult time.

Philip K.1

Client Served

Rating: 5

Three years ago, I was diagnosed with metasticized pancreatic cancer (yes, I am very fortunate to have lived this long, with an ongoing good quality of life). A family friend referred me to ICAN. I contacted them, and Marcia Horn, the executive director, became my advocate. Marcia has been absolutely fantastic. She has given me expert, actionable feedback and advice every step of the way. She is always extremely responsive. She has worked closely with my local doctors. And she connected me to a world-renowned genetic cancer specialist, who will put me on a nonstandard genetically tailored chemo regime when the standard regimes are no longer effective.

More generally, Marcia works closely with experts and companies around the world to facilitate advances in knowledge and treatment for cancer patients worldwide.

Client Served

Rating: 5

Six years ago I was diagnosed with Ovarian cancer. I had never heard of Ican at that time. I spoke to a friend and told him my diagnosis and he told me I had to speak to a lady named Marcia. This was late on a friday night so I told him I would call her the next day. He said no, call her right now. Thank god I did. We spoke on the phone for about an hour and a half. She gave me complete instructions on what I had to do on Monday morning. She gave me the top three physicians for my cancer and told me to get an appointment with one of them. By Monday I had an appointment with the number one doctor that week. To make a long story short I was in surgery within two weeks. I had robotic surgery and was feeling great and on my way to a complete recovery within a few days. Thinking my adventure with cancer was over I went back to my life. Six years later completely unexpected and out of left field I was diagnosed with stage four, Her2+, advanced breast cancer. Thinking I was pretty knowledgable about this cancer business I selected an Oncologist and started chemotherapy. By my second treatment I was near death and in the hospital. My husband , in shear terror called Marcia , told her my condition and said please help us. Marcia immediately got us set up at the #1 breast cancer treatment center in California. As soon as I was able to travel, we set out for California. I ended up staying there for over two months, getting my all my pre surgery chemotherapy and than having surgery. God knows chemo was not fun, but nothing like I had previously endured and I was able to stay out of the hospital the entire treatment time and handle all of my chemo treatments. Today I am in radiation and back in chemo for my Herceptin, but I am able to live a full life. The best news is my tumor is completely gone. The even better news is I have a little hair on my head again. Were it not for Marcia I would be dead today, without a doubt, instead of living a full life with some hair.

Previous Stories

Client Served

Rating: 5

When I received my diagnosis of Ovarian Cancer, I was completely stunned and had no idea of what to do next. Luckily a dear friend told me about Marcia Horn and ICAN and at 9pm on a Friday night I received a call from Marcia. After spending an hour on the phone with me she told me the top three Gynecologic Oncologists and exactly the steps I needed to take. I had an appointment with the number one doctor within a week and was in surgery in less than 2 weeks. Marcia reviewed the pathology reports with me and has been invaluable in my care. Marcia Horn and ICAN are beacons of light at the darkest time in a cancer patients life.

Aiko F.

Client Served

Rating: 5

I am very grateful that I ever got to meet Marcia Horn, President and CEO of ICAN!  As you can imagine, I was very upset when I found out that my pancreatic cancer had metastasized just 2 weeks after I was told that I was clear from cancer.  Marcia reviewed my treatment options with me and provided me not only the guidance I needed, but hope and courage.  She is very knowledgeable and informative.  She responds to my questions any time of day!   She is just incredibly amazing!!!

General Member of the Public

Rating: 5

A family member found the Exon 20 Group and ICAN after I was diagnosed with stage IV lung cancer in 2018. My diagnosis was, to say the least, overwhelming. After speaking with director Marcia Horn, my family and I have all felt so much better about my treatment options and can’t say enough about the support we get from this amazing group of helpful and caring people. Marcia is an incredible wealth of knowledge and it is so reassuring knowing we have an advocate like her in my corner. Their resident pharmacist Elena Siltanen has also been particularly helpful and so patient with all of my many questions about how to deal with side effects from my treatments, and always has an encouraging word when I’ve reached out. She and Marcia always seem to have answers when I need them most. They genuinely care about every member. I don’t know where we would be without this organization and I’m incredibly grateful for all of their help.

Advisor

Rating: 5

I have followed the work of Andrew Brown Jr. on behalf of ICAN for several years now. He has a tremendous span of ideas of ways to help cancer patient advocacy, and great enthusiasm for moving initiatives forward. He has a special interest in increasing participation in tests and treatments for people of color with regards to research, testing, and treatment, but simultaneously keeps his focus on the total population's exposure to cancer. He and I have discussed ways to work together to advance ICAN, and I am sorry to say that my negligence and distractions have kept us from realizing any of those efforts... up to now. I am continuing to try to find ways to work with ICAN and Mr. Brown.

Andrew J Brown J.

Client Served

Rating: 5

When I got my prostate cancer diagnosis in 2011, it was just another thing, another difficult addition in a time of marital dissolution, family illnesses, and financial chaos. I had no experience of my diagnosis as heartrending, as panic inducing; it came at a point where life seemed to pile on.

I knew to investigate. I knew to visit as many cancer specialists as possible and to question their recommendations, and to gather credible information about their particular forte.

I did so unto the point of being stuck. I was in paralysis-by-analysis: I had much information and had listened to each cancer specialist assure me that his/her approach was correct while telling me that other specialists couldn't offer me better. All of this information had me frozen in indecisiveness.

A dear friend had lost her husband to prostate cancer a few years before I received my diagnosis. It was only natural that I would share with her my travails. When I told her of all my due diligence and of my being stuck in place, she was dismayed at my immobility. She urged me to call ICAN. She was sure that ICAN could help me find a way forward, and if she was so certain, then that was then good enough for me.

Marcia picked up the phone and began my life saving advocacy. ICAN, which to me *IS* Marcia Horn, helped me out by giving context to all of the data I had gathered. ICAN helped me see that much of cancer care is siloed. Each specialist an expert in her/his universe, is to often isolated from other cancer care perspectives.

Marcia affirmed my research. She instructed me to see a medical oncologist, one who's concern would be the best treatment for my prostate cancer and not necessarily invested in a particular practice's treatment. I was stunned when she suggested me specific doctors here in the Hub of the medical world. She didn't leave me hanging!

Were it not for ICAN, well, I don't know and neither do I want to consider such for too long. Connecting with Marcia and ICAN was the tipping point at which surviving this disease became my reality.

ICAN's investment of its time and expertise in my life to extend, to save my life, has imbued my life with this goal: to help Black, LatinX, and other underserved cancer patient populations receive ICAN's loving, expert, invigorative cancer patient advocacy as have I.

Client Served

Rating: 5

I am so grateful to have found ICAN and the Exon 20 Group and to have gotten to know Marcia Horn, the executive director. Marcia is very informative and has been a great resource for finding leading edge clinical trial treatment options for rare types of cancer like mine. Thank goodness there are people like Marcia and organizations like ICAN and the Exon 20 Group who help cancer patients like me and are also advocating on our behalf.

Helen C.3

Client Served

Rating: 5





If my experience is any indication, this is an outstanding nonprofit. Diagnosed with stage 4 lung cancer in November, I was overwhelmed - as most cancer patients are. ICAN was recommended by a cancer survivor/advocate, and it was incredibly fortunate she did. Marcia at ICAN was instantly available and unbelievably helpful, guiding me to a Portland oncologist with a stellar reputation - someone I would never have known about; strongly cautioning me on a proposed treatment that did NOT suit my genetics, offering information and resources and helping me sort through a massive amount of information. In the months since, nothing has changed; ICAN is always informed, always helpful, always available. ICAN is truly worthy!






Client Served

Rating: 5

I am a Stage IV NSCLC EGFR exon 21 survivor since July of 2016. I was recently referred to Marcia Horn at ICAN through a survivor/friend from our local lung cancer support group. Marcia immediately responded to my e-mail and made herself available on a Sunday afternoon to answer my questions and provide me with valuable 'tips and resources' for my specific situation. She even sent a follow-up message the next day to provide me with potential treatment plans and miscellaneous additional things to discuss with my oncologist's visit later that week. Marcia is an excellent resource! She is brilliant, knowledgeable, compassionate, and tenacious. She has already had a tremendous impact on my awareness of potential future treatment plans, clinical trials, and resources to help me navigate this disease. Her positive approach and demeanor is refreshing and eases the anxiety associated with a cancer diagnosis. Everything about Marcia encapsulates what you would describe as 'the perfect cancer advocate'. I am grateful for Marcia Horn and ICAN. CThuney

Client Served

Rating: 5

I probably don't have much to add and echo the sentiment of many of those here who have had the privilege to get support from Marcia at ICAN.
I will say if you have a loved one or you yourself are recently diagnosed with stage 4 cancer then Marcia at ICAN is an excellent resource for your treatment. Not just to start but also ongoing, especially for clinical trials and the management of side effects. She has extensive knowledge of oncology treatments and a network of doctors running clinical trials she can make referrals and introductions. She will help with complex subjects regarding treatment options and is an excellent resource and sounding board.
She also works in the background with Doctors and drug companies to convince them to make their clinical trials available to those most in need, stage four patients.
I can't recommend her enough. This is not your normal service organization.

Client Served

Rating: 5

Words cannot begin to describe how grateful I am for Marcia Horn and the ICAN organization. When my otherwise very healthy and active mom was diagnosed with stage IV lung cancer my family felt scared and hopeless. Marcia has provided support and guidance through this very complex disease. She is responsive and makes herself available to talk or email when needed. My mom was recently hospitalized, when I emailed Marcia to let her know she called me right away. With her I have an advocate with many years of experience and resources walking through this journey with us. She also connected me with Carmi Fazio, RN who is an absolute angel! She also has many years of experience in the oncology world and very willing to help in any way she can. She makes herself available and very responsive to email. She shares her experience and has a way of easing our anxiety or concerns. I could not imagine my mom (and our family) fighting this cancer without their support!
With much gratitude,
Amy

Client Served

Rating: 5

Every organization should have a guardian angel like we have in Marcia Horn!!!!!! There are not enough words to show my family's appreciation. The resources and connections she has given us is unrivaled. We wouldn't be where are in this horrific journey without her and this org.

Client Served

Rating: 5

I can't begin to express the gratitude my family and I have for Marcia and ICAN. I am an She has not only been a great source of information, experience and insights, I firmly believe that the progress I have made is in part due to Marcia, her network and the work she does for ICAN. As is often the case, there are times throughout this journey that are more difficult than others - Marcia has a way of turning those difficult times into optimism and positivity. She has spent significant time speaking with me and my wife, and I know she does the same for as many patients as possible. Her success and the success of ICAN is that she is the ultimate connector, bringing together patients, clinicians, researchers, biotech and many others all have a common goal of eradicating cancer. I will continue to support Marcia, ICAN and the Exon 20 group in anyway that I possibly can.

1

Client Served

Rating: 5

We can't express enough gratitude to Marcia Horn and ICAN. Her deep and nuanced knowledge, and fierce advocacy have resulted in direct, life-giving results for my wife who is living with lung cancer. Beyond this, her warmth and kindness offer a ray of hope and comfort on this difficult path. Thank you, Marcia. Thank you ICAN.

Client Served

Rating: 5

There are not enough stars to give full credit to Marcia Horn and her work. Marcia has achieved legendary status among NSCLC clinicians, researchers and caregivers, bridging the gap between patients and access to promising treatment options. She is brilliant, compassionate, tireless and tenacious and continues to be a steadfast guiding light for so many of us in this fight. I personally credit my husband's current health status to Marcia's lightning-swift work in connecting us with a top specialist. To say that we do not know where we would be today without her is a gross understatement. She is a lifesaver in the truest sense of the word.

1

Client Served

Rating: 5

Wow. I don't know where to start. When my 54 year old brother was diagnosed with stage IV Lung Cancer it was surreal. One day he was totally healthy and the next day, he had lung cancer with bone mets. We felt like we were drowning, helpless. His wife found out about ICAN and Marcia Horn. She threw us a life raft, and has kept our family afloat since then. Connecting us to key people and providing resources and education.
I am beyond floored by her responsiveness. To be honest, I am not sure she is human because I don't see how one person can do what she does. But apparently she does. I can not think about this organization without tearing up. My level of gratitude is off the charts. Thank you Marcia and ICAN.
Julie Suesserman

1

Client Served

Rating: 5

I would also give this advocacy group at least 10 stars. Marcia Horn is a wealth of information enabling patients to have the latest knowledge and options and to have hope. She is quick to respond to any questions and takes the time and effort to help everyone find the best options for their particular situation.

1

Client Served

Rating: 5

I would give ICAN ten stars if I could. I can not adequately express how much I appreciate Marcia Horn’s advice and support. When the world seems darkest, Marcia is there to offer options and make everything seem more doable and survivable. I am a NSLC Exon 20 survivor and I don’t make treatment decisions without discussing them with Marcia. I honestly do not know anyone more knowledgeable than Marcia on Exon 20. She cares deeply about everyone suffering from this disease and seems to have unlimited time to help everyone as much as they need. She and her organization are the gold standard of cancer support organizations.

1

Professional with expertise in this field

Rating: 5

ICAN helps in so many ways. From helping patients get connected with the most useful treatment to connecting people with support groups to staying up on all the latest research - this is an incredibly valuable organization.

Professional with expertise in this field

Rating: 5

I am a Web researcher at ICAN,
Very thankful to my friend and my leader who gave me the opportunity to be involved in this great Organization. For me it combines both the volunteering work and research to help the community, develop my knowledge and career.
Thanks to the great help that ICAN provide for the late stage cancer patient.
I will keep helping out in this remarkable family.

Professional with expertise in this field

Rating: 5

I'm a Web Research Intern in ICAN for a year ago . It was a great opportunity for me to be a part of this excellent community.
My experience with this family exceeds my imagination either on the personality level or scientifically one.
It helps me a lot to read and know more about cancer especially the Lung Cancer.
Thanks for everyone in this marvelous organization.

Professional with expertise in this field

Rating: 5

I work in web research
Working with ICAN is my favorite part of the day which compine both medical research and volunteer work,
I had the chance to work with the most cooperative leader who lead me through every single step and reminding me of the value of charity.
In this team I never stop learning and developing myself.
My deepest thanks to all ICan family.

2

Client Served

Rating: 5

As I reflect on the impact Marcia Horn, President of ICAN, has had on my life, longevity, peace of mind and positivity, options, knowledge, access to resources and my overall health… I am honestly not sure it’s possible to reduce my feelings of profound gratitude to a couple of typed paragraphs. I truly stand in awe of Marcia Horn. She has an innate ability to understand a highly complex arena of cancer treatment options, studies, trials and results…. retains every single detail and then explains what is relevant to each patient… in terms they can easily comprehend! Her decades of experience in this field have proven invaluable to my team and me.

After being diagnosed with Stage IV NSCLC (EGFR exon 20 insertion) it became readily evident that this rare genetic mutation was vastly underserved and needed a spotlight and focus. After forming the Exon 20 Working Group, Marcia was instrumental in helping us ramp up participation on a worldwide level in a very short period of time. We now have brought together approximately 150 experts in the field, as well as every exon 20 insertion patient we can uncover. The spotlight that was needed is now shining bright thanks entirely to Marcia and her team.

Marcia Horn is a truly remarkable person and I am so blessed to call her my advocate.

-Kevin Hanlon

Mohamed Ahmed H.

Professional with expertise in this field

Rating: 5

I work as a web research at ICAN for several months. I learn more and more from this experience and I am very grateful to help patients suffering from cancer under this great umbrella.

2

Professional with expertise in this field

Rating: 5

I am an Advanced Practice RN with over 30years experience and have been involved with the care of cancer patients from not only a provider role but also as a wife and caregiver for many decades. I have advocated for patients in many oncological settings to include Dana Faber, Sloan Kettering and MD Anderson. I became introduced to Marci Horn, President of ICAN in the last two years as I am helping a dear friend navigate the health care system as it relates to his diagnosis with NSCLC. I am thankful for Marcia and the team of experts at ICAN as they have greatly improved the ease of access and awarness to all treatment possibilities, not just those that are mainstream or FDA approved but to include ongoing clinical trials and future trials.
I highly recommend this incredibly valuable resource to any/all patients, advocates and families as we attempt to navigate the tumultuous waters of cancer care. There is no need to go this alone or wonder if/what other options may be available. Marcia and her team work endlessly behind the scenes to help patients achieve better outcomes.
With utmost sincerity,
Colleen Zogby, FNP-C

1

Professional with expertise in this field

Rating: 5

Marcia and her team are so top notch that I cannot imagine anyone else out there having more information and options available for cancer patients. The work she has done and continues to do is unbelievable in terms of understanding patients and their families as well as treatment plans. This powerful combination is what will one day make Marcia Horn and her ICAN team known throughout the world.

2

Professional with expertise in this field

Rating: 5

When my brother got diagnosed with Stage IV lung cancer, we weren't sure what to do, who to turn to. Yes, we were in contact with the experts in both Syracuse and Boston and they offered immediate treatment options but we didn't sense there was someone one level higher up who had a grasp of the "big picture" as regards guiding my brother in his journey from treatment to treatment. We had come to understand that this was a world in which one treatment wasn't going to be the answer. Instead, it was a world in which a strategic sequence of treatments would be needed. Chemo, targeted, immuno, radiation, etc. This became very complicated and confusing. To be honest, we felt like we were on an island, lacking someone to run the show.

Then one thing led to another and we reached out to Marcia Horn at the International Cancer Advocacy Network. This was a true blessing. March 15, 2017. I have kept my original email to her.

Marcia has many years of experience in the area of patient advocacy and is extremely well connected with the top medical leaders in the field. She has been with us every step of the way, helping us at each decision point, always available when we need help, always working behind the scenes to determine the most promising "next in line" therapy. I have relied on my own scientific research background to rapidly come up to speed in the science involved and have continually teamed with Marcia in the decision making process. She has been wonderful. We can't thank her enough for the tremendous difference she has made in our lives, helping us to remain calm and confident, helping to keep my brother alive.

1

Volunteer

Rating: 5

ICAN is simply remarkable. It does more to help people with late-stage cancer than organizations many times its size. I have seen ICAN and its President, Marcia Horn, help numerous people, including family and friends.

I am honored to have volunteered for ICAN for many years and will keep helping out for many years to come, including at the terrific golf tournament and other enjoyable events ICAN puts on each year.

1

Client Served

Rating: 5

Marcia Horn was nothing short of a godsend to us when my husband first got diagnosed with an EGFR mutation NSCLC. We had felt utterly hopeless until a desperate late-evening internet search led me to ICAN. I immediately sent an email inquiry through its website, and within minutes I received a "call me asap" reply from Marcia. She was so kind and wonderful to speak with and was an absolute wealth of information, spending almost an hour on the phone with me that very night, downloading me on the treatment info, advances, data, research, etc, specific to my husband's disease. Her information helped validate the treatment protocol that was being prescribed for him, which in turn brought us both confidence in our doctors as well as a sense of relief that we were moving in the right direction. I hung up from our conversation with a feeling of hope that I had not had before. That very phone call made all the difference in how we moved forward with a treatment plan and true hope for recovery.

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.

2

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.

1

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

Client Served

Rating: 5

I really believe so wouldn't be here today without ICAN..their advice and moral support helped give me the courage to fight. I'' eternally grateful.

Professional with expertise in this field

Rating: 5

ICAN is an incredible organization because of the extensive and great work they are doing for the cancer patients. My experience with ICAN is a life changing experience. It's wonderful to see how they are very helpful and supportive to the patients and also the research volunteers. I have no words to express my gratitude to ICAN and Marcia Horn.

1 Ahmed E.

Professional with expertise in this field

Rating: 5

I love ICAN. My friend referred me to ICAN to be a volunteer to gain new experience and to help the cancer patients. I am enjoying my experience with ICAN. I have worked on several projects with them and it's very good to work with different team leaders to gain different experiences.

Professional with expertise in this field

Rating: 5

ICAN is a great organization and I love what they are doing with helping the patients. I am very supportive to ICAN. I am a volunteer at ICAN and they are very helpful and supportive to their volunteers.

Professional with expertise in this field

Rating: 5

I have been volunteering at ICAN for almost a year and I really enjoying my experience with ICAN. They have a fantastic board who are working really hard to help the cancer patients. I very much support ICAN.

Client Served

Rating: 5

ICAN is amazing they have been so incredibly helpful for my mother. She is currently battling cervical cancer that has metastasized. ICAN put us in contact with the best doctors which are giving her the best treatment imaginable. Without them this awful disease probably would of taken my mother from me. Truly grateful for ICAN I can't say enough great things about them. They are making a huge difference for my mother and a incredible impact on the cancer society. I couldn't be more happy every time I talk to them they make me feel important like talking to family.