THE BURNING LIMB FOUNDATION
Just Don’t Quit
The Burning Limb Foundation gives those suffering from CRPS and related illnesses a community resource that provides advocacy and action through a lens of compassion, hope and understanding.
Our goal here at Burning Limb is to help those individuals, their families and caregivers find their voice, so that they won’t have to fight that battle alone. This disease isolates people strips them of their will to fight, so it is important for us to explore solutions that incorporate healing the mind, body AND spirit. We do not believe in pain suppression, we believe in addressing the root cause – neurologic dysfunction. We believe that those who are suffering can eventually lead normal lives again; we have seen it with our own eyes.
How does the Burning Limb Foundation work? Here is one example so you can see how your funds will be used – but we are not limited to this one avenue or approach:
Our vision – but we are not there yet – we still desperately need funding:
We want to be able to provide financial assistance in the form of direct payments to those physicians we trust who have proven adept at providing comprehensive care to those with chronic illnesses such as CRPS. One example would be a referral to the physician who treated me, Dr. Katinka van der Merwe and the Neurologic Relief Center.
We will provide a grant for patients to travel to Fayetteville, AR and undergo 1-2 weeks of non-invasive treatment to address the root cause of a patient’s symptoms. If there is a positive response, the course of treatment is most effective over an 8-10 week period. The cost of treatment is approximately $1,800 – $2,000/week, nearly all of which is not covered by insurance. The cost of a local hotel suite is $400/week Add in a gift card to cover costs of food for a week at roughly $200 and we can reasonably expect a per week cost for treatment, lodging and food to be roughly $2,500.
Our goal is to be able to tell a patient that all they have to do is show up for a week and see if the treatment is successful, we take care of billing, hotel arrangements and the like. The last thing anyone suffering wants to do is worry about the logistics and how they are going to pay for it and or get there. We also want to have our grant recipients “buy into” the process and establish gofundme accounts as treatment progresses so that they have some ownership as well – we view ourselves as facilitators and partners.
Other ways we will assist:
• Covering the cost of durable medical equipment that will be taken home after treatment which can run anywhere from $2,000 to $5,000.
• Travel costs
• Retreats focusing on mind/body healing that help address past traumas.
• Assistance obtaining service animals.
Unfortunately we cannot assist with day to day living expenses.
One of the lessons we have learned from seeing this disease up close is that it is truly amazing the amount of trauma that the human body can withstand. Whatever level you think you can withstand – you can go one step further. Ultimately everything comes down to motivation and mindset – the more fundamentally you are broken at your core the more you are forced to mutate into a better version of yourself.
We understand how broken and isolated one feels in the midst of the pain, we believe that healing not only comes from repairing the neurologic dysfunction, it also means healing the mind and spirit. Without addressing this part of our trauma we will always be carrying around a part of this monster with us. We want to help you become the best version of you there is.