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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

Volunteer

Rating: 5

I have volunteered for this organization for at least 10 events they have out on. One thing that is so great about this nonprofit is that they help someone no matter what kind of sickness they have. They can get you in touch with the greatest doctors around the country. They have helped countless people with sicknesses. I have referred two cancer patients, and they couldn't have been happier with their experience with ICAN. They are amazing!!

Volunteer

Rating: 5

Both my wife and daughter developed cancer. Fortunately, my daughter - who had Ovarian Cancer over 11 years ago - is still alive and well. During her early cancer treatments ICAN was deeply involved and I believe helped save her life. My wife, unfortunately, did not survive her cancer, and though I had tried to have her see the physicians ICAN had suggested, and to follow a chemotherapy course strongly recommended by both ICAN and consultants, she refused.

I have been working with ICAN for over 10 years and believe that it is the most effective and well run cancer advocacy organization one will find in this country. The work they do is phenomenal

Professional with expertise in this field

Rating: 5

I have volunteered for ICAN for almost a year. I considered it to be one of the most serious, well organized and truly devoted to patient care cancer organizations I have had the pleasure to work with. As an MD., I consider my time to be valuable, therefore I'm really thorough about where I spend my free time at. ICAN provides volunteering options for all kinds of professionals as well as accommodating to all types of schedules.

Michele O.

Professional with expertise in this field

Rating: 5

I have been volunteering for ICAN for about three years now. This is my first volunteering experience and it is an excellent one. I work on the Cancer Literature project, collecting and organizing material for other teams to use. I feel like I am helping others but at the same time I am learning a lot. All contact is by email but I believe I am beginning to know the people I am woking with. The work atmosphere is very pleasant. I believe ICAN fills a unique niche in the way they support patients with advanced cancer. I wish they had more funding so they could help more.

Professional with expertise in this field

Rating: 5

I have referred several cases to ICAN all of which have been handled with immediate care and prompt response! They make sure all areas and issues are addressed and dealt with in a professional and caring manner. I have worked with them for many years and will continue to do so for many more!!!

Professional with expertise in this field

Rating: 5

ICAN has some of the most talented, dedicated people I have had the pleasure to work with. ICAN has extremely motivated and dedicated staff passionate about their work, provides truly supportive and selfless service to their patients and has an autonomous work environment.I have had the chance to work with several non profits in the past but ICAN stands out among all of them because of its true leaders like Marcia Horn, president and CEO and Regina Kolpfer,Director of Research Services and other dedicated staff continuously putting their effort to make ICAN better so that their patient would get one of the most outstanding service.My time at ICAN as a Research Team Leader has been extremely rewarding as I learned some of the qualities like motivation, perseverance, hardwork, selflessness,extremely service driven and so on. There is not enough word to explain my appreciation for ICAN. Being associated with such an organization with great mentors is one of the best experience I have had ever.I would recommend volunteering at ICAN because of its greater cause towards the society as well as the support, advice and encouragement you will receive while you are there.

Client Served

Rating: 5

ICAN's adeptness, discernment, knowledge, time, expertise, integrity, care, and ability to truly support with sincerity, adeptness, and unwavering, and inexhaustible dedication, selfless service, and pure hearted spirit to advocate for the most vulnerable, is valued beyond words as a patient. There are not enough positive words to express appreciation for International Cancer Advocacy Network (ICAN)

Ryanna S.

Volunteer

Rating: 5

I began as a Media Relations & Lobbying Volunteer in July 2010 & love it! My most interesting project was a legislative letter writing campaign urging Pennsylvania state legislators to approve equal insurance coverage for oral chemotherapy medicine. The majority of my projects have involved researching cancer articles & collecting media contact information. I studied public relations in college & am trying to get accepted to the Master's program at ASU West. I am in a wheelchair & can't handle a full-time job outside the home. Part-time, paid work in P.R. was too difficult to find. This was the best way to get my start in public relations. I am eternally grateful to Marcia Horn for giving me that chance!

1 Charles28

Advisor

Rating: 5

ICAN, the International Cancer Advocacy Network is at the vanguard of cancer patient care. Led by its amazing President and CEO, Marcia Horn, and steered by outstanding board members and scientific advisors, ICAN works tirelessly with cancer patients to ensure that they get the best care possible. ICAN was an early advocate for personalized medicine well before the current paradigm shift towards individualized molecular profiling became an integral part of patient care. ICAN's work with late stage cancer patients is extraordinary, serving each patient on an individual basis, hand holding as they address tough clinical decisions. I have volunteered with ICAN over the past three years as a member of the Biomarkers Council, where we provide scientific expertise in the area of molecular profiling. ICAN also works to implement and advocate for changes in public policy that benefit cancer patients. Please support ICAN today in any way that you can.

Morgan La Femina

Advisor

Rating: 5

I was an advisor on healthcare financing issues for the International Cancer Advocacy Network as well as a Director of research team leaders. Not only is ICAN a great place to volunteer, but they work tirelessly to serve the public. They are experienced, providing creative direct patient navigation and information services with the goal of extending life with the highest achievable quality of life. If you have a diagnosis of cancer they will help you to navigate the rapidly expanding diagnostic and personalized treatment options available to you. ICAN is a great place to start a career and and as always a great place to find specialized options for those diagnosed with cancer.

Client Served

Rating: 5

My dear friend Valorie, did research for me on recurrance colorectal cancer and found ICAN and Marcia Horn. My spirit was lifted to great heights after speaking with Ms. Horn about ICAN and my particular cancer. She actually was on the phone with V and myself for almost a half and hour, explaining in great detail, the various companies (such as Caris) that can assist in helping find the correct chemotherapies for colorrectal cancer, especially recurrance. She helped me have Caris compare my 2004 cancer cells with that of my current case. Caris stated I was getting the exact chemo that I needed from Memorial Sloan Cancer Center in NY. What a relief. I am truly in debted to Marcia Horn and ICAN >>> I will never forget her words to me... We will never leave you alone, we will be with you all the way. How wonderful is that? I am forever greatful. Cathy Larsen

Donor

Rating: 5

ICAN is great in everything they do with cancer patients, oncologists, biomarker experts, drug-discovery scientists. They are amazing. Thank you, ICAN, for all you do.

Client Served

Rating: 5

ICAN Phoenix, AZ is excellent. I was terrified and overwhelmed. I went to the experts at ICAN and they helped me with complete commitment, deep compassion and comprehensive knowledge that helped me get through my decision-making process, surgery, and treatments. I recommend them without reservation. ICAN is excellent, professional and fully prepared to help anyone and everyone lucky enough to find them. I thank God for ICAN. Contact them immediately if you need help, you will be in safe, caring hands.

Client Served

Rating: 5

Hands down, this is the place to go if you are suffering from confusion, lack of knowledge, or just someone to show kindness, during your battle with cancer. No other organization came close to what ICAN has done to help me. They are the most committed and kind people that I have ever had the pleasure of talking to. Thank you Marcia Horn and the rest of your team! I love you all!
Cathy Larson

Professional with expertise in this field

Rating: 5

ICAN is a unique nonprofit that has never relied on media to tell a story. It has solely grown on the strength of word-of-mouth. Marcia, CEO and President, and ICAN’s all-volunteer teams give so much individualized attention that the patients and their families have been inspired to join ICAN as volunteers themselves.
I first learned about ICAN around the Christmas holidays of 2010 via volunteermatch.org when I was looking for a cancer charity where I could use my background in cancer drug discovery and interests in cancer biology. When I finally talked to Marcia in February of 2011, I was impressed by the way things are done at ICAN and I immediately knew that this is one cause (and place) that I can identify with and where I WANT to put all my energy in.
At ICAN, my role is to provide tools supporting the physician teams that handle patients’ therapy decisions. Whenever I am called in to help on a case, I help by identifying possible therapeutic interventions based on published data or scientific logic; identify potential clinical trials; or, sometimes locate relevant experts. I’m not an oncologist. The oncologists/physicians/surgeons on ICAN’s board may use some of the information that experts like me are able to collect and guide the care of patients. I don’t hear much about the patients or the outcome which is a good thing because it also reinforces the sensitivity and need for patient privacy in the current environment.
I also manage ICAN’s group on LinkedIn and post updates on cancer drug trials and cancer biology. I urge you to join and add to the discussions on this group.
I have found so much joy spending time on ICAN’s cause that I wouldn’t be surprised if the last one-and-half years extend to decades of volunteerism for this one-of-a-kind nonprofit.
-- Ajay Malik, Ph.D., San Francisco, Calif.

General Member of the Public

Rating: 5

I have several friends with different types of cancer. My first call on behalf of each friend goes to ICAN. Marcia Horn, executive director and co-founder, has an outstanding knowledge of worldwide resources and medical care to help with each particular type of cancer. She has surrounded herself with the best of the best and has steered me in the right direction each time. My friends can't believe the depth of understanding and specific information that ICAN provides. I have seen first-hand how ICAN has extended lives.

Volunteer

Rating: 5

ICAN is truly an incredible organization. The services it provides are unparalleled by any organization of its kind, and the level of involvement, investment, and caring for individual patients has exceeded my greatest expectations for what I had hoped to become involved with. The services that ICAN provides for patients, in what is undoubtedly the most difficult time in their lives, and at no cost, provides such hope. Marcia Horn, CEO,tirelessly works all hours of the day, 8 days a week, to ensure that ICAN patients receive the best possible care to maximize their chances of survival. The volunteer experience is of equal match, as Marcia takes the time to ensure that the volunteers are engaged to their best potential and provides unique opportunities to gain involvement and experience. I can't recommend ICAN highly enough...if advocacy were an Olympic sport, ICAN would win the gold.

Board Member

Rating: 5

I have continued gratitude to ICAN for its role in my late mother's battle with Ovarian Cancer. Although this terrible disease did take her life in May 2010, she outlived her expected prognosis and lived well and happily until just weeks before she died. ICAN CEO Marcia Horn did so much for Mom - from fielding her calls in a sensitive way to helping refer her to specialists. I believe Marcia truly cares. I have been in the presence of other families who feel the same. ICAN is worthy of accolades, grants, and more. I am proud to be volunteer member of its Board and I also consider Marcia a dear friend.

General Member of the Public

Rating: 5

Throughout of my sister- law's fight with  lung cancer ICAN  was always there with her to explain thing that the doctors did not have time to explain. iCAN was there when ever critical decisions needed to be made. They were always there.   Jerry. Binder

Client Served

Rating: 5

My dear friend has multiple myeloma. In her calls to ICAN, she always got more helpful information than she did from her doctor. For that reason and others, she asked her advocate at ICAN to refer her to a new oncologist and is thrilled with the one they referred her to. She really feels that having ICAN at her side has helped her tremendously both medically and emotionally, in her fight against her disease. I am so impressed with what ICAN has done for her that I'm asking for friends and family to make donations to ICAN instead of buying me Christmas gifts this year!

Chuck C.

Client Served

Rating: 5

In January of 2003 my sister's daughter Claire was diagnosed with Glioma a type of Brain Cancer. It was a huge tragedy and everyone in the family was deeply concerned. Claire was only 14 at the time. Over the next year many things were tried to help her. I was introduced to Marcia Horn (CEO of ICAN) from Ted Rogers (president of the National Speakers Association in Arizona at the time). When I first talked with Marcia she said to me "We never give up on children!" We became immediate close friends.

ICAN was not involved in Claire's initial treatment, however when all else had not worked, (My sister is a nurse and her ex husband is a doctor and they had many resources). Anyway, Claire was getting treatments for her Cancer but nothing was working. When the time for the Hail Mary move came, ICAN stepped up to the plate and helped get Claire into an experimental program. Unfortunately, Claire passed away just after her 16th Birthday on March 23, 2004. She was a wonderful child with a great future ahead, but it wasn't meant to be.

I have been involved with ICAN ever since then and am on their leadership development council. Helpings others like Claire it is well worth the time.

Recent Activity:
Since I have been involved in Tango for several years, and have a bit of a creative brain, it somehow made sense to do a show. Currently I am the producer/director of a show called ICAN Tango and will be held on October 20th in Tucson Arizona. http://www.facebook.com/events/385522744843432/

Client Served

Rating: 5

My sister was diagnosed with lung cancer and kidney cancer. I didn’t know where to turn for answers. Another organization was nice, but they just gave me pat answers that sounded like they were reading them from a book. I felt like the person on the phone wanted to get rid of me. That was not the case with ASKICAN.ORG. They were, and still are, my most important resource to deal with my sisters terrible diagnosis. They are like angles sent from GOD!

1

Volunteer

Rating: 5

The International Cancer Advocacy Network (ICAN) is at the forefront of cancer patient care. Led by its extraordinary President/CEO, Marcia Horn, and guided by outstanding board members and scientific advisors, ICAN works tirelessly with cancer patients to ensure that they get the best care possible. ICAN was an early advocate for personalized medicine, well before the current paradigm shift towards molecular profiling became an integral part of patient care. ICAN's work with late stage cancer patients is remarkable, helping each patient on an individual basis, holding their hands as they address difficult clinical decisions. I have volunteered with ICAN as a member of the biomarkers council, where we provide scientific expertise in the areas of molecular profiling. ICAN also works to implement and advocate for changes in public policy that benefit cancer patients. ICAN helped a friend of mine with melanoma, guiding him through international roadblocks and helping him to access top clinicians, and for that I am most grateful.

Client Served

Rating: 5

I have a dear friend who unfortunately has been diagnosed with recurrent colon cancer. I have been desperately trying to get information on where she can go for a second opinion. I happen to be a biotechnology recruiter so sent out a “Can you help” note on some of the life science groups for which I am a member on LinkedIn. Within a few hours I was contacted by a wonderful research scientist by the name of Scott Kahn, who immediately started networking with the many specialists that he knows in the NYC area. Shortly after, I was contacted by the CEO of AskICAN.Org, Marcia Horn, who spent at least an hour with me on the phone to get the facts of the situation so she could find me the resources needed. I now have a clear plan of action, thanks to this wonderful nonprofit that is filled with great people like Scott Kahn and Marcia Horn. I contacted another well known nonprofit here in NYC, and never received an answer. They deserve 10 stars!!!

Volunteer

Rating: 5

ICAN is a wonderful organization to volunteer with. I learned a great deal and felt like I made a difference.

Client Served

Rating: 5

When I was diagnosed with breast cancer I immediately contacted ican and they have helped me every step of the way! I truly would not have known what to do if it wasn't for ican!

Client Served

Rating: 5

When we found out that my sister had breast cancer, we started researching different organizations to find answers and help. ICAN was at the top of the list after speaking with a few people about their service! It was a relief to have someone explain the different types of breast cancer, the stage and what to expect. They provided resources, questions to ask the doctor and the best advice was to create a binder with all the patient information to have at all times. Especially when you're at the doctor. They took their time, never hurried us and made us feel very comfortable.

Volunteer

Rating: 5

I have been a volunteer with ICAN for almost 3 years. I started out in one our research positions and gradually worked my way from that into Research Team Leader position and finally into my current role as Director of Strategic Planning and Operations for Research Services. I have never volunteered with an organization where each and every one of the volunteers were so committed, so dedicated and so wonderful. I am definitely feel honored that I can be part of organization with such a worthy cause and truly wonderful volunteers.

Client Served

Rating: 5

My husband read about ICAN in the December 2011 Newsweek article and encouraged me to contact them. We had just emerged from several months of intense treatment for metastatic Stage IV breast cancer (my original diagnosis and treatment was in 2006), including emergency spine surgery, and almost eight weeks of radiation treatment. When a Pet scan revealed there was no improvement but actually progression in my disease on hormone therapy, we were both stunned, scared and very disappointed. After a few days of processing this bad news, I pulled up the ICAN website and sent off an email immediately. Within a few days I was speaking to Marcia Horn, President and CEO of ICAN. Our conversation took almost an hour of Marcia's time, while I feverishly scribbled down notes. Before speaking to Marcia that morning, I was feeling terribly anxious and pessimistic. Marcia urged me to join the percentage of breast cancer patients who have survived their odds, suggesting names of exciting new treatments and specialists who would consult with me. Marcia urged me to consider taking a closer, more comprehensive look at my individual pathology and gave me information to follow up with Caris Life Sciences, a state of the art lab in Dallas doing some very exciting work. We are still waiting to determine if chemotherapy is next in line for me, but at Marcia's insistence we are now in the position to determine what might be the most effective step for me. And one that might save my life. I am only 48 years old and have two young daughters and a loving husband and family to live for. The next time I saw my doctor I came with a stack of notes and questions, and now the data of the Caris lab results. I am so grateful for Marcia and her team of volunteers at ICAN for giving me a sense of empowerment at this most critical time of my life.

Volunteer

Rating: 5

I joined ICAN with hopes of giving my time to something that really matters, and it definitely lived up to my expectations! Everyone that I came in contact with was enthusiastic about her/his work, and being a part of such a helpful and experienced team gave me great confidence. My Research Team Leader, Aniko, had everything one can possibly ask for in a team leader, and I am happy to have had the chance to work with her! Being with ICAN helped me to gain insight into the world of research and taught me a lot of useful skills for my future. Each member of ICAN is extremely knowledgeable about his/her area of expertise, and I am proud to say that I was a part of this!

Client Served

Rating: 5

I consider ICAN to be a very helpful breast cancer support network. They have taken the time to find information for me concerning a vaccine trial, as well they are looking into oncology services in my area which might fit my situation. I appreciate the assistance of Marcia Horn and ICAN.

Client Served

Rating: 5

After hearing the diagnosis of breast cancer and words/phrases that I did not understand, I called Marcia Horn, ICAN's Pres/CEO. Here brother urged me to call her and I am so glad I did. It was a couple of days before Christmas 2011. I do not remember much about Christmas and New Year's 2011. However, I remember every single conversation I had with her between December 23 and January 10 (and we continue to talk). Marcia's calm and reassuring willingness to share her expertise was our rock until we finally spoke to the team of doctors that are taking care of our daughter. I will forever be grateful to have Marcia explain every step of the way - what to expect good/bad/ugly. Because of Marcia and ICAN I am stronger through this "pink journey," as our granddaughter Nikki calls her mom's breast cancer diagnosis/prognosis.

Volunteer

Rating: 5

I am a Research Team Lead volunteer with ICAN's Lobular Breast Cancer Research Team. I really enjoy being able to contribute to a great cause like ICAN. It feels good to be able to donate a little time with an organization that has such a great impact. It has been one of the most rewarding volunteer experiences I have been engaged with!

Donor

Rating: 5

Because of my niece's involvement with this organization over the last decade or more, I looked into who they are and what they do years ago and have been a donor ever since. I only wish I were wealthy so I could donate more. As a breast cancer survivor myself, I am always attuned to other cases of breat cancer and have referred several breast cancer patients to ICAN over the past few years. I could not be more happy about the effectiveness of ICAN's Breast Cancer Advocacy Programs in extending lives and helping patients to have the best quality of life possible. ICAN makes sure that all options are considered and that no stones are left unturned
in each patient's battle. Bravo to ICAN's patient advocates who make such a big difference to breast cancer patient lives!

judy

General Member of the Public

Rating: 5

I moved to Phoenix in 2007 after being diagnosed with breat cancer & treated in New York back in 2005. In 2010 the cancer returned and not knowing many physicians here I turned to family for referrals. I was told to contact ICAN & spoke with a wonderful person who guided me with a plan of attack with many different doctors. If it were not for the generous help of great people I could not get through this.I am grateful to ICAN for all their assistance.

Previous Stories

Client Served

Rating: 5

When I was diagnosed with breast cancer for the second time I did not know where to turn for advice and referrals. I am new to the state of Arizona and was told about ICAN through a relative. I contacted Marcia Horn & she took hours on the phone & follow up e-mails helpiing me.
I am from New York and did not have the good fortune of having such a great service as ICAN; of course there were avenues to explore through the hospitals and breast cancer centers. It was left up to the individual to find good doctors.
What we need is a better recognition of ICAN nationwide to enhance the tools needed for helping people diagnosed with cancer.

Client Served

Rating: 5

My wife has Stage IV Metastatic Breast Cancer. It can be quite a challenge to figure out the best approach to take in dealing with it. Marcia at ICAN has been very helpful. We informed her with what procedures, drugs and doctors we were using, then advised and encourage us on what we could do further.

Client Served

Rating: 5

My experience with ICAN has kept me sane about a diagnosis that can send one spinning down a black hole because you are totally ignorant when you are first given such diagnosis. You do not think of breast cancer as coming to live with you and when it happens, it is a 24 hour nightmare from which you cannot wake up. Thanks to ICAN I was able to focus on what had to be done. The kind tone of an understanding voice that had answer after answer for me and my family has made the breast cancer diagnosis be what it is. We have faced it, we are working through it, and thanks to ICAN and its guidence, we have our lives back under control. Thank you, Marcia.

Client Served

Rating: 5

ICAN advocates do great work for breast cancer patients! Helpful in all fields, caring, encouraging and information.

1

Volunteer

Rating: 5

My first contact with the International Cancer Advocacy Network (ICAN) occurred in late December, 2011 in conjunction with a diagnosis of Stage 1 Breast Cancer. I needed information to make informed decisions about treatment options. Speaking with ICAN's resident angel, President and CEO Marcia Horn, I encountered someone who was professional, knowledgeable, dedicated, and compassionate. By the end of our phone call, I had a plan of action and hope for the future. I couldn't have asked for a better Christmas gift!

I am a Communications, Marketing, and Design professional who is very selective about the organizations with whom I volunteer because it is important to me to live my values in all aspects of my life. No one at ICAN asked me to volunteer. I offered my skills and time about a week after my initial contact with the organization because a follow-up call with Marcia made it exceeding clear that ICAN is a patient advocacy organization steeped in integrity and totally focused on helping each individual patient win his or her personal battle with cancer. The organization places a premium on providing each patient with the most up-to-date and accurate treatment and resource information for his or her particular cancer. They are sensitive to each patient's situation while also being supportive and encouraging.

So what's it like to be an ICAN volunteer? After two months and literally tons of hours, I can honestly state that being an ICAN volunteer is a totally positive experience! The organization has high standards and expectations as it strives for excellence in every aspect of its operations. Praise and encouragement are abundant. The staff, leadership, and even other volunteers go out of their way to let you know that you and your work are valued. Moreover, you have the satisfaction of knowing that your contributions are making a difference, not just in your particular area of service, but to the well-being and effectiveness of the entire organization and, by extension, to cancer patients residing all over the globe. Awesome responsibility and equally awesome personal rewards

Advisor

Rating: 5

Since 2001 I cannot think of a more important organization doing the work they are doing on an international based right here in Arizona. I lost my first wife to Stage IV colon cancer, and Marcia Horn and her team were all over it trying to help and advise as to weather we were getting the right drugs for the treatment, and if we had the right docs and the right facility to begin with. Sadly, she died because her cancer was so bad, and spread so fast, yet ICAN was always there. My second wife was diagnosed with Stage I colon cancer in early 2011, so of course the first call we made was to ICAN to get advice as to where might be the best docs for her to see, as what what be going on with feedback we first had per the diagnosis. Five minutes later Marcia was on it, and we were on our way with sound support and advice. Science is science, and drugs are drugs which means somtimes things don't get as one would like; however, when you need an advocate-one that happens to be local for us since we live in Arizona-ICAN has been there ---G. Seitts, Scottsdale, AZ

Volunteer

Rating: 5

I am a Research Team Leader. I supervise (via email) all the work that several research interns do and review the end product before it is posted to the ICAN website.
I know that ICAN truly appreciates all of its volunteers! They are very kind and responsive to all their volunteers and they care deeply for the cancer patients they support and help. I have volunteered at numerous organizations over the years and this is one of the most integrity-filled and best-run nonprofit organizations that I have every worked with.
I am a certified project management professional and a CPA who has worked at top notch organizations in the business world so my expectations about quality and integrity are very high -- and I can say that ICAN meets and exceed all my expectations.
A few hours a week can make a big difference in the lives of the cancer patients that ICAN helps. All your efforts provide support to so many all over the world. The work can be done when it is convenient for you and ICAN works with you to provide the type of volunteer work that you desire. I would recommend this organization to anybody looking for a rewarding volunteer experience!

Volunteer

Rating: 5

I am a member of the public and a sometime volunteer.
I was first introduced to ICAN through their musical events at which the great pianist, Ronald Jacobowitz, entranced and educated the audience. He not only played beautiful classical piano music but gave us background information on the composers their times and the musical developments i.e. early to late Beethoven. Through the people I met at these musical events I learned about the important and wonderful work ICAN is doing.
I have been able to give ICAN and Marcia Horn- ICAN's CEO- contacts to people in Phoenix and elsewhere in the world who have had need of a cancer advocate. They have all reported to me how helpful Marcia Horn has been to them and their families. In some cases they just felt full of despair and hopeless before they contacted ICAN. Marcia helped them see what they could do to help the cancer patient and find the best current medical care. ICAn is there locally and globally.

General Member of the Public

Rating: 5

I found out about ICAN through their salon music programs.
I enjoyed listening to pianist, Ronald Jacobowitz, talk about the composers and their music and then play the best piano music I have heard.
While at the concerts I met other people interested in ICAN.
I volunteered for some office work working with delightful people .
In addition to my selfish pleasure of hearing the music I got a wonderful sense of satisfation when I was able to tell people with cancer about ICAN.
They always called back to tell me how wonderful , knowledgeable and empathetic Marcia Horn, the CEO of ICAN , was. She helped them through very trying times with sensitiviy and expertise.

Volunteer

Rating: 5

Ican facilitates cancer patients , who are under stress, to find the treatment center that is doing the the most advanced work in their area of caner.
A friend in Boston called me. She was understandably very tense and stressed. Her grandson had just been diagnosed with cancer.

Her husband was an eye doctor but they were looking for cancer treatment expertise. ICAN , she later told me, was able to talk to them knowledgeably , with sympathy, empathy and care.

Volunteer

Rating: 5

ICAN has been very supportive to both patients and their families. A case that I personally witnessed was with a fellow T.B. who came to ICAN in his final days! Both he and his wife were in severely depressed. A friend told me that his wife was furious with the world and would not cooperate. Her husband T.B. was very impressed Marcia Horn and thankful for the help he received..Marcia met with the wife and after a few meetings she became very supportive. After T.B. died Marcia and his wife continued to meet and she has beome a volunteer! There just is not enough time in the day for Marcia, she even recruited me to participate in an ICAN project for which I need to make the time! With her example, I will. Eugene B. Shapiro.

1

Volunteer

Rating: 5

I fit many chairs as I am a retired physician who, in the course of volunteering for ICAN (International Cancer Advocacy Network), has also served on the Board and as Chairperson of its Medical Advisory Council.

Over the past 10 or so years I have developed great respect for the organization, especially its CEO, Marcia Horn. Her knowledge of the intricate, complicated aspects of cancer and dedication to assisting laste stage cancer patients acheiving the best hope of survival is unmatched. The one-on-one personal contact with cancer patients or family, and the review of their medical records and treatment is not dupicated anywhere that I know.

What ICAN needs is more money and more staffing so that it can expand serving more patients in great need of this vital service.

Volunteer

Rating: 5

My time as a Web Research Intern has been incredibly fulfilling. I've learned so much about cancer advocacy and even medical/scientific aspects of cancer simply by compiling research and literature for ICAN's resource project. Also, the communication between volunteers and the supervisors and executives is extremely efficient and quick. It's impressive!

Volunteer

Rating: 5

Volunteering for ICAN has been one of the richest and most rewarding experiences in my long career as a cancer researcher. I was searching for an organization that would allow me to give back to the cancer community in a meaningful manner. What can I say! Volunteering for ICAN has surpassed even my wildest imagination. Their passion, enthusiasm, and total commitment to helping people with cancer just encourages one to want to do more. The team leaders and off course, Marcia are some of the most dedicated people around. Communicating with them all has been such a pleasure. There is no stress, just encouragement and a willingness to listen to ideas. I endorse this organization wholeheartedly.

Volunteer

Rating: 5

I came across ICAN's website when I was looking for meaningful volunteer work to do before starting my graduate program. It has been amazing ever since and I can't imagine ever leaving! The assignments are fulfilling and the entire team is incredibly friendly and cooperative. Marcia (CEO+President) works day and night and is always willing to lend a hand. It's good to know that the effort I put into this role helps people who have no hope in finding help: late-stage cancer patients. I highly recommend volunteering for ICAN.

Krysten J.

Volunteer

Rating: 5

I thoroughly enjoy volunteering for ICAN. I learn a lot from my research and it feels wonderful to be contributing to such a great cause. The organization has excellent communication, which helps to keep me up to date and answer my questions quickly.

Board Member

Rating: 5

I am proud to be a Founding Trustee of ICAN and to have underwritten the first paycheck of its CEO, the first IRA bequest, the first corporate donation, the first matching funds donation, and the first Will and Trust beneficiary clause. I have been involved with the organization since day one. Most of the members of our ICAN boards and councils have witnessed some of the desperation of the cancer patients who first call our office in terms of the uncontrolled sobbing and anguish of patients’ family members. And we have also witnessed the euphoric relief at the end of that first conversation that they’ve finally found an organization who will never let them down and which will chart out strategic options for them that their first medical team overlooked. Personally, I have referred cases to ICAN, ranging from lung cancer to bladder cancer to mantle cell lymphoma to rare brain tumors to benign tumors. I even refer cases outside the cancer area when no other organization has a handle on the patient's diagnosis.

No one has named or identified any other organization that does what ICAN does, and many of our patients initially had sought help from multiple cancer organizations--whether nationally known breast, lung, myeloma, brain, pancreatic, melanoma, leukemia and lymphoma, colon, prostate, or thyroid organizations to name just “the majors.” The telling tribute to us is that our patients stay with ICAN for the duration of their battle or recovery. One Ohio patient, who had been written off as a hopeless case six years ago, recently e-mailed ICAN that her latest scans showed the much-coveted “No Evidence of Disease” status. ICAN had played a huge role in outlining the strategic options she chose in her battle for life and in encouraging her to choose the combination chemotherapy that ultimately has prolonged her life.

General Member of the Public

Rating: 4

What a great idea for a nonprofit...international advocacy for all cancer patients. I hope to learn more about you.

Client Served

Rating: 5

I was diagnosed with Malignant Melanoma in January 2011 and underwent a full node removal under the arm in February. During the recovery period I was faced with many options regarding which clinical trial I could partake in, this is where I was introduced to the ICAN service. From the moment I contacted them I knew I was speaking to a team of people that really did understand what I was going through and the many decisions I was faced with. ICAN provided me with the most up to date research and analysis and we discussed many different options. Their guidance was 1st class and gave me the reassurance that I was so much in need of.

I wouldnt hesitate to recommend the services of ICAN, they really do put the client/patient first with the care an attention that is so greatly needed when dealing with Cancer.

Volunteer

Rating: 5

I had the privilege of serving on the board for several years and got to see first hand the amazing service this Org provides and the niche it fills. i continue to be a strong supporter and donor. I never hesitate to let friends and family know of their fine work particularly if they are in need of counsel on their health situation. Several of my friends are alive today do the the careful, conscious advice provide by their amazing team. THere is tremendous need for a resource in later stage Cancer cases and i know of no other i could turn to that will provide true options like ICAN.

Lynn L.

Client Served

Rating: 5

I found the “The International Cancer Advocacy Network (ICAN)” when I was first diagnosed with Stage 4 Melanoma. My doctors gave me 6-9 months to live and offered me palliative treatment. No one even mentioned clinical trials. In my desperation I searched for my own treatments and found Marcia at ICAN. Together ICAN assisted me in connecting to trials, and on some occasions even telephoning them to find out why it was taking so long to get back to me. ICAN knows time is precious and we don't have time to waste waiting....
ICAN also assisted me in researching and finding the most recent immunotherapy/drugs available, researched types of surgeries and pushed me to move forward in times I faltered. I needed support and they provided that, as professionals and as friends I could rely on in my times of distress. I am currently diagnosed as stage 4 melanoma and NED (No Evidence of Disease). I have been NED for 15 months. In June 2009 I was told I would be dead in 6-9 months...ICAN helped me make the life altering decisions that I can honestly say gave me life! I'm still standing and I am still here!!

General Member of the Public

Rating: 5

My sister was a stage IV patient that was involved with ICAN. I can't even begin to tell anyone what a great resource this group was for her in her time of need. They not only helped us to interpet a multitude of medical information but also offered suggestions, alternative options and were able to give some idea of the effects of these treatments.
The ICAN team bent over backwards to be supportive in every way possible and really took a personal approach to my sisters care and well being!
I cannot thank them enough!

Client Served

Rating: 5

I was diagnosed with two cases of Cancer simultaneously: Melanoma & Esophageal.

ICAN connected me with a MOHS (I never before even heard of MOHS) surgeon who removed the Melanoma. Now, unless I point it out, no one even sees the scar on the middle of my forehead.

ICAN connected me with a Medical Oncologist and a Radiation Oncologist.

Now, quarterly PET/CAT & Endoscopy find no evidence of Cancer in my esophagus!

Client Served

Rating: 5

Marcia & ICAN were extremely instrumental in assisting my sister who had stage four lung cancer. Marcia is considered to be a hero to our family! She gave my sister direction & hope during her final year of life. Words cannot express the gratitude we feel for ICAN & Marcia. My sister was so happy to be involved with such a great organization.

Volunteer

Rating: 5

Volunteering for ICAN these past two years has been a wonderful experience for me and I wouldn’t trade it for anything. As the Director of Research Team Leaders, I can say that I work with what I consider to be some of the finest and most dedicated virtual volunteers in the world. Each and every one of our volunteers works so hard to further help us obtain our truly worthy goal of prolonging our patient's life with a high quality of life .

Client Served

Rating: 5

When my Dad was diagnosed with amyloidosis, we didn't know where to go for information because it is so rare. We were referred to Marcia,
who was wonderful about providing insight into the technical aspects of
the disease and confirmation that we were proceeding with the proper treatment.

Client Served

Rating: 5

I DON'T KNOW WHAT WE WOULD HAVE DONE WITH THE HELP AND COMPASSION WE RECEIVED FROM MARCIA HORN AND ICAN!!! WE WERE IN CRISIS MODE WHEN WE RECEIVED OUR DIAGNOSIS AND MARCIA WAS AMAZING...SHE WAS ABLE TO INFORM US AND GET INFORMATION TO OUR FAMILY THAT HELPED US GET THROUGH A VERY DIFFICULT AND EMOTIONAL TIME....ICAN NEEDS TO BE RECOGNIZED FOR ALL THE GOOD THEY DO FOR FOLKS LIKE US. HOPEFULLY THEY WILL RECEIVE THE DONATIONS THEY NEED TO REACH EVEN MORE FOLKS IN NEED OF THEIR SERVICES!

Client Served

Rating: 5

It is comforting to have an independent viewpoint and a resource to get questions answered. This organization does this with such compassion. Amazing. Thank you for all that you do. You touch the lives of so many people. We are so very grateful.

Volunteer

Rating: 5

I have been working as a virtual volunteer with ICAN for a few months now and it has been a wonderful experience. Everyone I have worked with and communicated with has been kind, helpful, and professional. They are extremely well-organized, and everyone is clearly very committed to doing good work and helping cancer patients. The work I have been doing has involved researching journal articles online, which has been ideal work for me since I am a writer and editor who does a lot of internet research for my day job. Virtual volunteering for ICAN is great if you like flexible work that you can do in your free time.

Client Served

Rating: 5

Ican and Marcia Horn are a unknown blessing that more people should know about when it comes to health needs. We have turned to Marcia Horn two different times for help. She will bend over backwards to help you 24/7, whether at work or at home. She has a knowledge of the best professionals and doctors in the Phoenix area for all health situations.
Our two particular situations were MRSA and Drug INTERACTION, she was there for us on both cases and very helpful. Sondburgs