We are proud to present the finalists for the 2018 Hero of Hope Patient Award! If you are not familiar with the nominees, read their profiles by clicking on their names, and cast a vote for your hero by Wednesday, October 31, 2018.
Living with Multiple Myeloma Inspires Research for a Cure
Our team has had the honor of working with Jenny Ahlstrom for the past several years. My one word to describe Jenny is superwoman! A multiple myeloma survivor and mother of 6, she was diagnosed in 2010 and has been working tirelessly since then to improve outcomes and accelerate a cure for patients with multiple myeloma.
Shortly after being diagnosed, Jenny realized that there was a serious need for access to simplified information for patients with multiple myeloma. Through her experience in systems engineering and marketing, as well as her husband’s experience as an entrepreneur, Jenny launched the CrowdCare Foundation and the Myeloma Crowd website (myelomacrowd.org) to empower patients to take actions toward accelerating a cure for rare diseases.
The first initiative Jenny launched was Myeloma Crowd Radio, which enabled her to share everything she was learning with other patients with multiple myeloma, caregivers, doctors, and researchers.
Each week, Jenny interviews top myeloma specialists about current clinical trials, and she also uses the time to address patient questions. To date, more than 110 Myeloma Crowd Radio shows have been recorded. These shows have now had more than 1 million views and listens. In addition to the radio show, the Myeloma Crowd website provides news and information on clinical trials for patients. Their readership includes patients and caregivers looking to stay up to date on all things myeloma. The content they curate is driven by a key question—What else can we do to speed up the pace of clinical trials and further multiple myeloma research?
Shortly after launching the site and the radio show, Jenny and her team initiated a project called the Myeloma Crowd Research Initiative. This project helps fund research that is focused on high-risk multiple myeloma. They assembled a world-class medical advisory board and a group of multiple myeloma patient advocates and sent out a Request for Proposal (RFP) to researchers all over the globe. This RFP generated 36 responses from around the world. Eventually 2 proposals were selected—a CAR T-cell immunotherapy in Germany and a T-cell immunotherapy at Johns Hopkins University. To fund these 2 projects, Myeloma Crowd launched a crowdfunding campaign, and raised more than $500,000.
The CAR T-cell project is now in clinical trials in Europe. Jenny’s next initiative was to increase the contact between researchers and patients throughout the United States and in other parts of the world.
To achieve this goal, Jenny, her team, and her family hit the road hosting live patient meetings throughout the United States and Europe to connect top researchers and patients in a program called Myeloma Crowd Round Tables. Through their research, their team also learned that patients live years longer if they receive treatment from a myeloma specialist, but fewer than 80% of patients receive treatment from myeloma experts.
To address this gap, the team developed several programs, including a Myeloma Specialist Directory, a new program called Myeloma Crowd Meetups, and a new software program—HealthTree. The HealthTree software allows patients with multiple myeloma to understand personally relevant treatment options, including clinical trials, and helps researchers understand more about multiple myeloma.
Perhaps one of the most impressive things is—Jenny does all this as a volunteer. All funds raised through her initiatives go back to awareness education and advancing research.
“My driving motivation is that of a mother who wants to see her children grow up,” she says. “Our family goal has been to buy me enough time so my husband and I can raise our children, and we are encouraged at the very real prospect of finding a cure.”
Jenny is a true inspiration and is fully deserving of recognition for her contributions to the patient community.
A Breast Cancer Survivor Empowers Women with Cancer
Lisa Lurie is a breast cancer survivor who is directly affecting the emotional recovery of women facing all types of cancer. She was diagnosed with breast cancer at age 47 and underwent a double mastectomy, chemotherapy, and oophorectomy. In a very short period, Lisa became bald, breast-less, and bloated from steroids.
She soon realized that the emotional recovery from cancer was as difficult as the physical recovery. She experienced firsthand how hard it could be to hang on to your dignity and self-esteem while battling the side effects of cancer.
When Lisa recovered, she realized that if she was struggling, other women must be as well. She was determined to improve the recovery experience for women coping with all types of cancer. She joined forces with her good friend, Ellen Weiss Kander, and together they formed Cancer Be Glammed.
The mission of Cancer Be Glammed is to prepare women for the appearance-related side effects of surgery and treatment, and to empower them to recover with dignity, positive self-esteem, and personal style. Two years after they started Cancer Be Glammed, Lisa’s co-founder, Ellen, died of liver cancer. Despite this devastating blow, Lisa’s extraordinary spirit, optimism, and determination allowed her to continue their mission to empower women recovering from cancer. She recognized the importance of helping other women and pushed forward.
She has launched a website, cancerbeglammed.com, Cancer Be Glammed TV, and more recently, a guidebook. Her website provides women with easy access to fashionable recovery products, lifestyle solutions, helpful resources, relevant blogs, and a dynamic community of women.
Her unique guidebook—Cancer Be Glammed: Recover in Style—features cancer survivors and is designed like a fashion magazine. It prepares women facing all types of cancer for the appearance-related questions and concerns that they may have. Her entire platform is devoted to positively affecting the lives of other women.
Lisa’s strength and determination, along with her passion to empower women, has continued to grow and evolve Cancer Be Glammed. Aside from this company, Lisa is very involved with her local community. She has partnered with a teacher from the local high school to help students experience the satisfaction of giving back.
Her project with teacher Julie Farber is called Jewelry Love. Each year they bring together students and women with cancer. The students design custom jewelry for each woman with cancer. These intricate and heartfelt pieces make the one who gives the gift and the recipient feel great.
In addition, Lisa is involved with Our Clubhouse, formerly Gilda’s Club. She launched her guidebook as a fundraiser for Our Clubhouse. This successful event raised money for Our Clubhouse, and Lisa donated copies of the book for their support groups.
This desire to give back and to support other people struggling with cancer is part of Lisa’s mission. Her company supports and promotes survivor entrepreneurs. Some survivors have created products or services to improve the quality of life for other people with cancer. It is evident across her entire platform of her desire to support and advocate for these survivors and their companies.
Lisa is a clear example of an empowered woman who is empowering other women. In the face of adversity, her optimism and continuous dedication to help women recover with dignity, positive self-esteem, and personal style make her a role model to countless women.
Lisa truly deserves to be a recipient of the Hero of Hope Patient Award. She demonstrates how one individual can inspire others and empower women to be the best version of themselves, while facing what may be the most challenging experience of their lives.
From Glioblastoma to OurBrainBank App
The worst health problem I’ve ever had until 4 PM on January 23, 2016, was a common cold. On that day, I was blind-sided by a seizure, while I was hiking in upstate New York. Two days later, I had brain surgery to remove a grape-sized tumor from the left parietal area of my brain.
Two weeks later, I was told I had glioblastoma, a type of brain cancer. Up until that point my life was good. I was Senior Vice President and Partner of Fleishman Hillard, the preeminent global public relations firm. I was happily married, and our 3 teenagers were thriving.
Then I found out I had only months to live. Glioblastoma is considered a terminal cancer. The median survival rate hovers at around 14 months. It has just taken the life of Senator John McCain, and it is the type of cancer that took the life of Ted Kennedy, Beau Biden, George Gershwin, and Mary Shelley.
And now it threatens mine. From the get-go, I decided to hit my aggressive cancer aggressively. I sought a second, and then third, opinion. I decided to throw everything at it. I’m a strategic communications consultant, which means I like to do a lot of research, and then set a clear path forward. So I supplemented the standard of care with a 2-year regimen of high-intensity treatments with radiotherapy, chemotherapy, immunotherapy, and electrotherapy.
In addition, I researched what I consider the best nutrition program—ketogenic diet—and intermittent fasting, as well as complementary medicines.
I did everything I could think of. I asked my neuro-oncologist, Fabio Iwamoto, MD, of Columbia University, why glioblastoma has such poor treatments. He explained that the complex, heterogeneous, rare, and aggressive nature of glioblastoma deters people from funding research. Only 5% of applications for funding into glioblastoma research are successful. I was frustrated, scared, and determined.
I channeled these emotions, coupled with a lifetime experience of strategic communications, into setting up OurBrainBank. My diagnosis became a license to be crazily ambitious. OurBrainBank is a 501c3 nonprofit organization, with a mission to move glioblastoma from a terminal to treatable cancer, powered by patients. I founded this organization because I couldn’t get that 5% figure of research funding applications out of my mind. We desperately need more research funding. The question is how.
While I was musing on this question, I was struck by how little monitoring I did of my various treatments. I realized that the medical model we work with prioritizes objective measures of how a patient’s disease is progressing, over subjective measures, that is, how people like me are actually experiencing different treatments.
I wondered if we could find a way to enable patients to monitor their own symptoms, which may make them feel more in control of their disease, not the other way around. In addition, if we invited them to share their data, we could invite medical researchers to analyze it for insights, as well as gain a deeper understanding of how treatments affect patients.
Dr Iwamoto was excited. He brought in Lakshmi Nayak, MD, from Dana-Farber Cancer Institute in Boston. I got in touch with one of my best friends in the United Kingdom who is chairman of a health tech start-up called Motif. Thus OurBrainBank was born.
In March this year, we launched a pilot program—a 100-day study of symptoms of patients with glioblastoma, which are being tracked on the OurBrainBank app, designed by Motif. It’s approved by the New England Independent Review Board.
The app is free, is available to any patient with glioblastoma or to a caregiver in the United States, and is proving to be popular in the glioblastoma community. You can download it from the App Store or Google Play, and register using a special code.
Patients can track 10 common symptoms, such as mood, fatigue, and appetite; share daily data with their doctor; donate their data to medical researchers to improve understanding of the disease; join a readily accessible patient pool to ease recruitment for clinical trials; and collaborate to raise awareness of glioblastoma and the desperate need for better treatments.
Over the past couple of years, I’ve felt increasingly empowered, engaged, and hopeful, because what I am doing is taking an entirely negative diagnosis and turning it into a wholly positive creation. Only good can come from OurBrainBank. And that is deeply motivating to me, my colleagues on the OurBrainBank board, and the hundreds of patients and caregivers using the OurBrainBank app.
I’ve turned my public relations skills from helping corporations to helping patients. I’ve “seduced” senior healthcare executives, professionals, patients, and a multidisciplinary team of medical leaders to contribute to OurBrainBank. We’ve raised $100,000 through crowdsourcing, and some initial support from the Novocure communications team. I’ve also authored Op Eds in the New York Times and in the Guardian, appeared on The Dr. Oz Show, CNN, been interviewed in podcasts from Julia Hobsbawm’s The Human and The Machine to Maria Menounos’ Conversations with Maria Menounos and Sarah Brown’s Better Angels with Sarah Brown.
Much more important, my kids are doing great. My eldest son produced a podcast about my first year of living with glioblastoma. Then he entered Georgetown University. My middle daughter staffed the OurBrainBank stall at the American Brain Tumor Association meeting, just before starting her studies at McGill University. My youngest daughter is entering junior year in high school—happy, ambitious, and kind. My husband and I are closer than ever, which is saying something, since we met at college ourselves. And I am taking tentative steps to return to work, part-time, in the fall.
And I am still here. Some 31 months since that day of my seizure, my MRI is clear. I have no illusions. I know there is a chance I could face a recurrence. When I feel low, I turn once again to the seminal essay written by Stephen Jay Gould, “The Median Isn’t the Message.”
Mr Gould writes, “Match people with the same cancer for age, class, health, socioeconomic status, and, in general, those with positive attitudes, with a strong will and purpose for living, with commitment to struggle, with an active response to aiding their own treatment and not just a passive acceptance of anything doctors say, tend to live longer.” I intend to do just that.
Art Kits for Kids with Brain Cancer
When Emma Stumpf was 7 years old, she began her fight with brain cancer. In the midst of endless rounds of chemotherapy and multiple surgeries, Emma found that art was a powerful tool to help her communicate what she was feeling when words couldn’t do the job. When she was sad, she would use blue. She used green when she was feeling ill, and used her favorite color—yellow—to express happiness.
Art was important to Emma, but there were days when she was too sick to make the trip from her hospital bed to the art room. On those days, Emma thought a lot about how valuable it would be to have easily accessible art right there in her hospital room—that’s where the idea for Emma’s Art Kits was born.
With the help of her school art teacher and support from her parents, Emma made it her mission to create art kits for kids like her who could benefit from the power of artistic expression even when they cannot leave their hospital bed. She imagined a small collection of art supplies that could be delivered to children at their bedside.
Emma’s Art Kits come in yellow plastic bags stuffed with coloring books, Play-Doh, paints, sketch pads, and colored pencils. The first few years of her project led to amazing results for Riley Hospital for Children in Indiana, where nearly 1000 kits had been delivered to children in the hospital.
With recognition gained from her great work, Emma won a local Jefferson Award from the Jefferson Awards Foundation in Delaware. This award is given to individuals who make a significant impact in their communities on the behalf of others. This made Emma eligible for the national Jefferson Award, which she indeed won in spring 2017.
As part of her award, the Jefferson Awards Foundation supported her efforts for 1 year. During 2017, Emma’s Art Kits were distributed to 13 hospitals across the United States. As support from the Jefferson Awards Foundation began to wrap up at the end of 2017, Emma and her family recognized the need for a strong partner to ensure that the vision of Emma’s Art Kits would continue and be sustained long-term. At that point, Emma’s Art Kits became an official program of the Cancer Support Community Central Indiana.
To date, more than 14,000 art kits have been distributed to children’s hospitals all over the country. Throughout this process Emma realized that children aren’t the only ones who should express themselves through art. She has now expanded her project to include art kits for adults.
Emma is an extraordinarily selfless young lady who is passionate about helping others even through her own adversity. She spent the summer of 2018 at Cancer Support Community Central Indiana collecting art supplies, packing and shipping art kits, and delivering kits to hospitals in the Indianapolis area.
She also experienced the happiness of her kits firsthand, when she distributed her adult art kits to individuals receiving chemotherapy in infusion centers in Indianapolis. Describing that day as one of her favorites, it is obvious that Emma is passionate about bringing joy and happiness to people. Young and old cancer survivors find hope and inspiration through Emma’s tireless dedication to helping those in need.