True Stories

Here at Cure AVN

We want patients to know they are the ripples of change and their voice matters.

This effort was inspired by the journey of one patient who said no to the status quo, and fought to turn a debilitating diagnosis into a network of elite scientists dedicated to progress through self-education and determination.

Founders Story

10 years ago, a budding choreographer was told after only two weeks of pain that she had the rare disease Avascular Necrosis in the hip.

A small divet of grey, a minor crescent on a radiograph, would seal her fate.
Although there had been no warning signs, she told she was stage III, and therefore was past the point of all known remedy.

Her inevitable end was a hip implant. She could try conservative measures, some which made little scientific sense, but they were usually unsuccessful in even earlier stages, and at her stage as little as 30%.

None of the doctors she visited had answers about what caused the disease, and her hard questions were met with avoidance or admonition. Some walked out of the room, claiming researching it further was hopeless, shrugging their shoulders. Some said they wished there was more proof for a regenerative alternative, but couldn’t take a risk. Some said, fight back, but it will take a serious fight.

If she gave up the fight, she would have to give up dance and the relationship to the body she knew. She would have to accept the marketing hype that hip implants were perfect, when she had seen them fail or ruin the abilities of people she had known. Was that the inevitable outcome? Was that a good solution, even if it meant many surgeries and continuing limitations to motion and health risks over time?

She knew there had to be another way.

She elected to go on crutches to protect her hip from further decay and focused on learning all she could about bone biology and chemistry and the promising emerging field of regenerative medicine, including stem cells and tissue engineering.

She engaged in dialogue with researchers in the field, many whose work was more obscure or was under the radar, and brainstormed with thought leaders or scientific elites in the field, pulling together teams of experts to advise her as she began to design novel surgical protocols.

Somewhere on the path of fighting to find a novel solution for herself while swimming upstream to convince doctors to adopt scientifically sound alternative surgical procedures, she decided that an organization had to exist to empower doctors, patients, and researchers to do the same…

Her goal: to turn her own battle for bone into something that could prevent the suffering of others, building new protocols and collaborations and to create a scientific launchpad with a targeted focus on turning promising research into actual cures.

EVERY VOICE MATTERS at CURE AVN

Born of a patient who loved dance, choreography, yoga, and movement, we are daring to change the orthopedic landscape… because intelligent questions asked by determined people can change the world

and anyone can be the one…

Be the Voice.

Whether you are an unheard scientist, doctor, advocate, patient, or just someone with a great idea about how we can create a new solution

WE BELIEVE:

That patients can be at the table of discovery and can become advocates for pro-active investigation of new ideas, and should believe they can partner with doctors in the hunt for new solutions.

That researchers across institutional walls can better connect, collaborate, and connect-the-dots to rapidly advance, putting patients before profits and protective approaches to IP.

That the chasm between inspiration and clinical endeavor must be shortened, and that doctors must be encouraged to embrace stem cell and biologic methodologies and the philosophy of innovative comprehensive joint preservation to think out-of-the-box towards alternative cures.

That the patient of today can be the healer of tomorrow, and that we all are patients or friends of patients — because the sudden impact of AVN reveals for all of us how quickly life can be altered by bone disease.

That this terrible condition can be an inspiration to the world and those with scientific knowledge to seize new opportunities.

That we are on the cusp of a major Sea change in tissue engineering and orthopedic potential and we all can decide whether we want to cling to the failed solutions of the past, or invest our energy into the pathway to the future.

That in conquering the pain, we find purpose.

LET YOUR STORY IDEA AND VOICE HAVE POWER

Join our elite member list to find out about or fund some of our researchers and exciting projects HERE.