Like many non-profits, the story of Rise & Rally begins with a deeply personal journey—one that might reflect your own experiences or the reason you found us. Our organization was created out of the challenges and frustrations faced by those dealing with chronic, complex, or rare conditions in a healthcare system that often falls short. We believed that, through our work, we could make life easier, more accessible, and less painful for others facing similar struggles.
This is just the beginning of our story. It continues to unfold with every new member, every shared experience, and every step we take together toward a better future for those with chronic, complex, and rare conditions. We hope you’ll join us and add your story to ours.
The creation of Rise & Rally begins with the story of our founder, Haley James. Raised in the bustling Bay Area of California, Haley lived a “normal” and healthy life—until she turned 21. As a senior at San Jose State University, she was eagerly finishing her bachelor’s degree in interior design, with a five-year plan already mapped out and pinned on her wall. But that plan was not to be, as her life took an unexpected turn during the fall semester when she began to feel very sick.
What started as seemingly minor digestive issues quickly escalated into a debilitating struggle to eat anything without feeling ill. This lasted the entire school year, forcing Haley to drop classes and find alternatives just to try and graduate on time. By the end of that year, she had earned her degree but still had no answers for her worsening health. Despite countless doctor visits and numerous tests, she was repeatedly told that nothing was wrong—and some even suggested she was causing it herself.
Like many patients facing chronic, complex, and rare conditions, Haley found herself becoming a full-time undiagnosed patient. Investigating and advocating for her own health became an unwanted, unplanned, full-time job.
While some providers were dismissive, a few genuinely tried to help. Those healthcare professionals often expressed regret that they couldn’t do more, apologizing for the hardships she faced within the medical system. Though their words were well-meaning, Haley often found herself fighting back tears, responding, “It’s okay, it’s not you; it’s the system.”
Knowing that true help was limited, Haley had to take matters into her own hands. She spent nearly all of her time researching, trying to understand what was happening to her. She taught herself to interpret lab results, read X-rays and brain scans, and connected with researchers across the U.S. and abroad. For five long years, she went from doctor to doctor, specialist to specialist, until she finally found the right experts who recognized her symptoms and could help.
With their guidance, Haley was quickly diagnosed with gastroparesis, chronic intestinal pseudo-obstruction disorder, and intestinal dysmotility. But that was just the beginning. When other mysterious symptoms began appearing, leaving doctors more worried about the progression of her condition, she flew across the country to Mayo Clinic to be seen by top specialists who could help put the pieces together. They did, and she was diagnosed with autoimmune autonomic ganglionopathy, a rare type of autoimmune dysautonomia that causes the autonomic nervous system—the system that controls all automatic body functions, to not work correctly.
She went from being chronically undiagnosed to being diagnosed with a multitude of chronic, complex, and rare conditions. These included postural orthostatic tachycardia syndrome, superior mesenteric artery syndrome, autonomic neuropathy, esophageal dysmotility, hypothyroidism, Raynaud’s, severe hypoglycemia, celiac disease, traumatic brain injury, bilateral neurogenic thoracic outlet syndrome, and many more—all of which ultimately led her to depend on a feeding tube and weekly IVIG infusions to survive.
While having answers and access to the right doctors was a significant step in her battle, it quickly became clear that just having the diagnoses wasn’t going to be enough.
Despite having a clearer understanding of her health challenges, Haley faced new obstacles in accessing the care and treatment she needed to survive. Confronted with insurance barriers, medication access issues, and healthcare system shortcomings, she found herself being required to enter the world of patient advocacy, tirelessly fighting to navigate bureaucratic red tape and secure essential treatments. She spent the next five years navigating and fighting the system at every turn, striving to get and maintain the care she desperately needed.
During this time, as her conditions required multiple specialists, Haley frequently found herself in doctors’ offices, labs, and with various healthcare providers who could not provide the help she needed. Some doubted her diagnoses or did not believe her, while those who wanted to help often apologized for their inability to offer adequate assistance due to their own limitations and the constraints of the system. Haley often found herself saying, “It’s okay, it’s not you, it’s the system,” as again, she would try to hide the tears that would inevitably roll down her face, knowing that she was in a battle with a system that she couldn’t win.
It became clear that the only way to win was to change the rules of the rigged game. So, she set out to do just that.
Haley advocated and met with state and federal representatives during those 5 years, shedding light on the current state of healthcare and the legislation hindering those with chronic, complex, and rare conditions. Through this work, she discovered her passion for patient advocacy.
Although she saw her efforts making a difference, she knew it wasn’t enough.
Despite having a clearer understanding of her health challenges, Haley faced new obstacles in accessing the care and treatment she needed to survive. Confronted with insurance barriers, medication access issues, and healthcare system shortcomings, she found herself being required to enter the world of patient advocacy, tirelessly fighting to navigate bureaucratic red tape and secure essential treatments. She spent the next five years navigating and fighting the system at every turn, striving to get and maintain the care she desperately needed.
During this time, as her conditions required multiple specialists, Haley frequently found herself in doctors’ offices, labs, and with various healthcare providers who could not provide the help she needed. Some doubted her diagnoses or did not believe her, while those who wanted to help often apologized for their inability to offer adequate assistance due to their own limitations and the constraints of the system. Haley often found herself saying, “It’s okay, it’s not you, it’s the system,” as again, she would try to hide the tears that would inevitably roll down her face, knowing that she was in a battle with a system that she couldn’t win.
It became clear that the only way to win was to change the rules of the rigged game. So, she set out to do just that.
Haley advocated and met with state and federal representatives during those 5 years, shedding light on the current state of healthcare and the legislation hindering those with chronic, complex, and rare conditions. Through this work, she discovered her passion for patient advocacy.
Although she saw her efforts making a difference, she knew it wasn’t enough.
At 30 years old, almost ten years into her health journey, and still navigating her own care, Haley became even more immersed in patient advocacy. Continuing to witness firsthand and through others’ stories the systemic injustices and barriers that plagued individuals with chronic, complex, and rare conditions, she became an even more vital and vocal advocate, leveraging her experiences and knowledge of both the healthcare and legislative systems to champion policy change and raise awareness about the challenges these patients faced.
During this time, Haley’s personal advocacy efforts were tested when she faced one of the hardest battles she had had with the system – the potential loss of access to all her specialized doctors, treatments, medical devices, and vital care due to forced insurance provider changes.
Knowing the ins and outs of the system, Haley mobilized all of her state government representatives and advocated daily along with her parents for five months to anyone and everyone she could contact in the system to try to find an option for herself and patients like her. There was nothing and no way to fight it.
It became clear to both her and the government officials, that there had been an oversight in the implementation of the new medical care model for her state. The only option was to create legislation to fix it. While it was something Haley and the representatives agreed needed to happen and all intended to do, they knew that would take a year or two, possibly even more. Haley didn’t have that kind of time, so she continued fighting and advocating trying to find any possible loop hole. Two days before she was set to lose it all, she discovered a contract, one that the insurance company claimed to be unaware of or somehow lost, that allowed patients to get care at the hospital she was advocating to stay at. This discovery allowed Haley to keep all her care and forced the insurance company to have to face the legal consequences of illegally withholding care from others and forced to work to make it right for the other patients they had wronged.
While that was great, it had taken all of Haley to fight the system getting lawyers, assemblymembers, senators, even the governor involved just to get her the care she and so many other patients desperately needed and should have had access to. The representatives and doctors apologized that she had had to go through all that she did and again, like many times before, found herself crying in tears, exhausted from the fight, but this time, instead said, “No. It’s not okay. That’s it. This cannot be the system”.
It was this pivotal moment, that served as a catalyst for Haley’s vision for Rise & Rally.
No patient has the time, energy, capacity, or ability to fight such a system alone. It’s exhausting, painful, and all-consuming. Yet, it’s required and expected for patients with chronic, complex, or rare diseases trying to survive in a system not made for them. This should not be the case, and for Haley, that experience, was the absolute last straw.
While Haley had been involved in patient advocacy for years, it was at this point that she wanted to focus on truly reforming the healthcare system for the chronic, complex, and rare communities, as she believed it to be at the root of so many of the issues she and these patients faced.
Unable to find an existing organization addressing these issues from that perspective, she became determined to create one that educated, equipped, and empowered individuals with chronic, complex, and rare conditions, and those who care for them, to advocate for themselves and others, and truly work together with all the people that make up the system, to change it and reform the healthcare system as a whole.
Rise & Rally was born out of this vision of uniting patients, caregivers, physicians, researchers, allies, policymakers, students and medical educators who all share a commitment to making significant, impactful, and meaningful changes in the healthcare system for these communities. All coming together on a mission to fix the broken systems and break down the barriers that impede the care of individuals with chronic, complex, or rare conditions and those who are trying to help them.
Creating Rise & Rally became Haley’s way of working to ensure that no one else would ever have to sit crying, whispering and feeling helpless saying, “It’s okay. It’s the system,” without any hope for change because Rise & Rally is that hope. Rise & Rally is going to bring that change. And ALL of us at Rise & Rally are going to fix it. We hope you will join us!
No patient has the time, energy, capacity, or ability to fight such a system alone. It’s exhausting, painful, and all-consuming. Yet, it’s required and expected for patients with chronic, complex, or rare diseases trying to survive in a system not made for them. This should not be the case, and for Haley, that experience, was the absolute last straw.
While Haley had been involved in patient advocacy for years, it was at this point that she wanted to focus on truly reforming the healthcare system for the chronic, complex, and rare communities, as she believed it to be at the root of so many of the issues she and these patients faced.
Unable to find an existing organization addressing these issues from that perspective, she became determined to create one that educated, equipped, and empowered individuals with chronic, complex, and rare conditions, and those who care for them, to advocate for themselves and others, and truly work together with all the people that make up the system, to change it and reform the healthcare system as a whole.
Rise & Rally was born out of this vision of uniting patients, caregivers, physicians, researchers, allies, policymakers, students and medical educators who all share a commitment to making significant, impactful, and meaningful changes in the healthcare system for these communities. All coming together on a mission to fix the broken systems and break down the barriers that impede the care of individuals with chronic, complex, or rare conditions and those who are trying to help them.
Creating Rise & Rally became Haley’s way of working to ensure that no one else would ever have to sit crying, whispering and feeling helpless saying, “It’s okay. It’s the system,” without any hope for change because Rise & Rally is that hope. Rise & Rally is going to bring that change. And ALL of us at Rise & Rally are going to fix it. We hope you will join us!
