Sickle Cell Disease
Adrienne is the mother of a daughter of sickle cell disease. Sickle cell disease mutates the body’s red blood cells, leading to agonizing pain and often death. In fact, 4 generations of her family have been ravaged by the devastating illness which has already taken the lives of too many relatives. Adrienne knows first hand what thousands of families go through every day, a life time of emergency room visits, and watching the ones she loves in crippling pain has strengthened her resolve to fight. Using her personal experiences Adrienne has dedicated her life to improving the care of people living with the disease and in supporting those searching for a cure.
Unfortunately, treatment for sickle cell disease is roughly the same now as it was over fifty years ago, with no real advances in treatment. Instead, pain management and hydration has become all that Adrienne and many families like hers can hope for.
Thanks to work supported by the California Stem Cell Initiative, a phase one human clinical trial is testing a revolutionary new treatment for sickle cell disease. This new treatment involves modifying adult stem cells to stop the mutation, paves the way for improved patient treatment, and could one day lead to a cure altogether.
Peripheral Arterial Disease
At the age of 64, I was diagnosed with peripheral artery disease and was required to have two major surgeries: one in Tampa, Florida and the other in Iowa City, Iowa. Threatened with an amputation looming, with little hope of success I made the decision to return to California, where I began to seek out a new doctor to monitor my disease. I was lucky enough to be introduced to Dr. John Laird and his stem cell research team at UC Davis Medical Center.
After taking the preliminary test, I was accepted into the study. This was a blind study, so I didn’t know if I would be lucky enough to receive the treatment; but, after one year it was revealed to me that I had been lucky enough to receive the stem cell injection. It was during this time I began to notice that my walking was easier, and I was experiencing no serious pain or discomfort. With the support and direction of my medical team, my life began changing for the better.
Stem cell research, like the trial I was lucky enough to be a part of, opened a new horizon for me; it could do the same for everyone else suffering from so many chronic diseases and injuries.
Today, I am a proud college graduate with a Bachelor of Science in Criminal Justice Administration and looking forward to beginning my Master program. I have also been able to start two businesses, return to cross country skiing and even sky-diving. Hard work and stem cell research have boosted my spirits to the highest level; now, I need to reach out and touch others by becoming an Ambassador for Stem Cell Research with Americans for Cures.
Type 1 Diabetes
I was diagnosed with Type 1 Diabetes two days before my 4th birthday. The constant use of needles and threat to my life was frightening and incredibly hard, especially at such a young age. It forced me to choose very early between two paths in life: I could choose to the path of anger and pity; or, I could turn my wounds into wisdom, and make life better for all of us suffering from Type 1 diabetes. I chose the latter and decided to help JDRF fight back.
Our family started our family team in 2004 when I was 4. Of course, my parents ran most of it, but by the age of 6, I started speaking at small gathering helping the JDRF raise awareness at corporate events. Being a patient advocate inspired me and gave me hope. By age 8, I was speaking at large galas, radios spots and live TV news segments. By the age of 10, I took over my walk team; I have been the leader ever since. To date, we have raised a little over $220,000.
In 2014, I was honored to speak at the Americans for Cures Milestones of Progress Retreat at Stanford University as a patient advocate for T1D. I am very excited to be an Americans for Cures Patient Advocate Ambassador because I believe that the single great hope to finding a biological cure to T1D and many other diseases lies in stem cell research.
In addition to running my walk team, I am also involved in the following:
• JDRF Youth Ambassador and 2015 Children’s Congress Delegate
• Americans for Cures Patient Advocate Ambassador
• Varsity Softball Pitcher
Connie was diagnosed with stage three pancreatic cancer in early 2014, and she was told she had less than one year to live. The doctors said that Connie’s tumor was too large and too close to the superior mesenteric artery to risk surgery. But, over a year and a half later, Connie is still very much alive and fighting every day to be healthier and find a cure. She cites her husband, Neil, as the primary source of her strength and unfailing courage. Vowing to educate herself and others about the disease, Connie formed a team for Purple Stride 2014, raising $35,000 towards the $340,000 raised by the event. Her Purple Stride 2015 team raised over $29,000. After months of chemotherapy, Connie’s tumor shrank enough to allow for surgery. And on September 30, 2014, Connie’s tumor was completely removed and she remains cancer free to this day. Connie attributes her success story to the wonderful care and encouragement she received during her treatment, and she has since begun working towards ensuring that everyone receives the same quality of care. It is hoped, that through continued research into solid tumor cancers like Connie’s pancreatic cancer, stem cell research will find a treatment, which will avoid the need for chemotherapy, or maybe even surgery. Americans for Cures is partnering with patients like Connie to raise awareness of the potential benefits of this research, with the hope of reducing suffering for many more people like Connie.
UC Irvine Mind Support Organization
Years ago, Frances lost her husband to Huntington’s Disease (HD). In a devastating series of events, Frances lost her youngest daughter, Marie, to the dreaded disease in 2009; and her second daughter, Margie, in 2014. Her third and only remaining child, Michael, is fully symptomatic and in the last stages of the disease. Her grandchildren have a 50 percent chance of inheriting the cruel disease.
Many, if not most, would have been overcome by anger or grief when faced with suffering. Instead, Frances has refocused her pain to help others, through the founding of HD-CARE: the UC Irvine-registered support organization that supports HD research and the HD clinic at the UC Irvine Mind Support Organization. She also established the Huntington’s Disease Society of America (HDSA) Orange County Affiliate, which later became an official HDSA Chapter. Frances’ drive, energy and passion for research have drawn many people into the community, and created a strong epicenter of support and advocacy.
It’s people like Frances whose strength and optimism create a better world. Frances is constantly fighting for a better future—a future without Huntington’s disease—while also living in the present and helping those currently impacted by the disease.
Americans for Cures wants to continue to fund stem cell research that may increase scientific understanding of Huntington’s disease, as well as possible ways to defeat it. This research provides hope and optimism for the HD community, and for people like Frances.
Major Heart Failure
Fred was only 59 years old and lived a healthy life when he suddenly experienced a heart attack while playing with his granddaughter. Despite pain in his chest unlike anything he had ever experienced, he calmly opted to be driven to the hospital.
At the hospital, Fred found out the damage to his heart was severe; his heart function was reduced by over thirty percent. The doctors explained to Fred that there was nothing to be done. No medicines were available to restore his heart to its previous state; he would simply have to slow and down and take it easy. However, slowing down wasn’t quite Fred’s style; when he found a lab team working with stem cell technology that could help restore his heart function and reduce scarring, he immediately enrolled in the clinical trial at Cedar-Sinai Medical Institute. Using cells from Fred’s own heart called cardiomyocytes, the Cedars-Sinai team was able to infuse these cardiomyocytes into the damaged heart with the stem cells and thus enable the heart to actually heal itself. The clinical trial in which Fred participated was just one of the 30 human clinical trials which received funding from the California Institute for Regenerative Medicine (CIRM), the State stem cell research funding agency approved by the voters of California and the passage of Proposition 71.
Today, thanks to stem cell technology, Fred says he feels better than ever. The scarring of his heart tissue has diminished; he can continue living his active lifestyle; most importantly, he will be able to watch his granddaughter grow up.
In 2006 Katie’s husband Mike was diagnosed with Huntington’s disease. In one horrific day their perfect life was changed forever. The doctors prognosis was bleak. They were simply told there was no chance of recovery and no hope for a cure. To make matters worse, this diagnosis left both their children with a 50/50 chance of inheriting the mutated gene which causes Huntington’s Disease.
Katie, however, refused to give up. She began to learn everything she could about the disease. She looked for further resources, and found a new source of hope through CIRM, the stem cell research organization funded by by the 2004 ballot measure Proposition 71. Mike has been involved in five clinical trials and studies. Katie and Mike describe their involvement in these clinical trials as empowering; they are proud to play their part in the search for a cure, and want to deliver a brighter future for their family and every other family devastated by Huntington’s.
As a way to deal with reality, Katie turned to writing and is now and is in the process of publishing her second book. Through her husband’s involvement in these trials, and her courage to share their story, Katie has become a solid rock of hope and advocacy for the entire community of those impacted by Huntington’s disease. As Vice President for Help 4 HD International, a consistent contributor for the Huntington Post, and a stem-cell research advocate for CIRM, Katie provides extensive support for research for this disease.
Huntington’s disease was largely considered incurable some years ago. However, with willing advocates like Katie, willing clinical trial patients like her husband, and with critical research funds delivered by the people of California, this horrible disease may one day be defeated.
Type 1 Diabetes
Director of the documentary The Human Trial (www.thehumantrial.com)
Born in Ottawa, Canada, Lisa has been producing non-fiction television and film for about as long as she’s had Type 1 Diabetes (T1D). She was diagnosed in 1991 while studying at the University of Edinburgh. The diagnosis came as a shock because—as is the case with 95% of newly diagnosed T1D patients—she had no family history of the disease. Lisa’s life changed in many ways that November night. At 21, she decided to change her career path from law to journalism, and then eventually, to film.
In 2011, Lisa had a particularly bad night of hypoglycemic attacks. It was enough to inspire Lisa, and her cinematographer husband, Guy Mossman, to make a film about T1D. “We wanted to make this invisible disease visible,” says Lisa. “It’s the first major film on diabetes.”
The documentary feature, The Human Trial (www.thehumantrial.com), has been in production for the last three years. The filmmaking team has been following ViaCyte, a small biotech company in San Diego, since they got the green light from the FDA to proceed to a Phase 1 human clinical trial in July 2014.
It’s an exciting film, and an exciting time for stem cell research, says the director. “How often do you get to go behind the scenes of a clinical trial that is using embryonic stem cells to potentially cure a major disease?” The answer is: rarely. And the filmmaking team is making the most of this opportunity. Their goal is to not only raise awareness about type T1D, but to shine a light on what it takes to push medical innovation forward in this country.
“It’s thrilling—on a personal and professional level—to be following this clinical trial as it unfolds,” Lisa says. “And without the funding from CIRM, ViaCyte wouldn’t be where it is today.”
Type 1 Diabetes
Senior Vice President—Member Experience, Livongo Health
Member, Board of Directors, Diabetes Hands Foundation,
Member, Board of Directors, National Advocacy Committee of the American Association of Diabetes Educators
Born in Venezuela, but having called California home for over fifteen years, Manny currently lives in the Bay Area with his wife and son. Manny has Type One Diabetes (T1D), and must manage his condition wearing an insulin pump, since his pancreas no longer produces insulin. He describes T1D as “isolating, alienating, and misunderstood.” Because the disease rarely shows obvious, outward symptoms, many people don’t understand the emotional and physical burdens of T1D.
Manny was diagnosed at age 30; for the first year after his diagnosis, he struggled to manage his blood sugar levels, and did not feel connected to his disease community. To ensure that other T1D patients would not feel as if they were suffering alone, Manny founded the Diabetes Hands Foundation: a nonprofit organization dedicated to connecting and mobilizing the diabetes community through two key social networks, one in Spanish and one in English. He explains that the sense of community and belonging is critical to cope with such a constant disease—one that forces millions of T1D patients to prick their fingers or self-administer shots many times per day; one that creates an atmosphere of fear of mistakes, hospitalizations and emergency room visits.
Besides his current role as Senior Vice President, Member Experience at Livongo Health, he serves as member of the Board of Directors of Diabetes Hands Foundation, chair of the “Living With Diabetes” Stream for the World Diabetes Congress 2017, scheduled to take place in Abu Dhabi, and member of the National Advocacy Committee for the American Association of Diabetes Educators.
Spinal Cord Injury
On September 5th, 2011, Rich was enjoying a beautiful day on the Stanislaus River with friends. In a moment that changed his life forever, Rich lost his footing, slid headfirst down a rock embankment, and over a 15-foot ledge. He landed behind a turbulent waterfall.
After being airlifted to the closest hospital, Rich learned the full extent of his injuries. His back was broken and dislocated, leaving him completely paralyzed below the waist. Rich was diagnosed as Complete T7 Asia “A,” which meant he had no sensation or movement below his injury.
Almost immediately after his accident, Rich became Patient No. 4 in California’s first-ever human pluripotent stem cell clinical trial: the Geron Trial. Rich wants people to hear his story of being in the wrong place at the right time and tell people what a cure would mean to him. Rich is a strong believer in the power of stem cells and is a committed advocate of stem cell research. Americans for Cures is proud to partner with Rich as a Patient Advocate Ambassador in the shared mission to make the public aware of the milestones of progress underway in the field of stem cell research.
Major Heart Failure
Subbiah was A 51 year old when he suffered a massive heart attack while driving his twin 10 year old sons to their sailing competition. Having always been active and healthy, Subbiah was horrified to learn that his condition would only worsen as his heart’s capacity for pumping blood deteriorated.
Fearing the possibility of leaving his family alone, Subbiah begin searching the internet for any possible treatments that would slow his heart’s deterioration within an hour of leaving the operating theatre. This was how he stumbled upon lab research project that could potentially save his life. Subbiah discovered that he was one of the rare few patients who qualified for their just started human clinical trial and was treated 30 days after his heart attack, after there was no sign of any partial natural recovery.
One month after treatment, Subbiah experienced a 90% recovery, and in another month he was almost fully back to normal and by 6 months probably as good as before. He described the ability to walk up stairs again – taking two steps at one time! Miraculously Subbiah was able to make a full recovery and is back to living his active and healthy lifestyle.