Help & Healing for Lora
Donation protected
Hello Dear Friends,
I am writing on behalf of my sister-in-law, Lora. She has been diagnosed with a rare disease called Complex Regional Pain Syndrome (CRPS-1) or Reflex Sympathetic Dystrophy (RSD). To date it has mainly affected her left foot, but in the last few days it has begun to spread to her right. The effects are often dibilitating with constant and intense pain, which causes many sufferers to go on disability. She describes the pain as if someone has poured gasoline on her foot, lit her foot on fire and then proceded to rub sandpaper all over it. She has been to 6 different doctors, including the foremost specialist in our area. She is in physical therapy once a week and on morphine-level medications just so that she may function and continue to work.
Lora has further received a series of epidural style sympathetic nerve blocks and still found no relief. Most recently, she was screened and approved for a clinical trial to receive a drug called Neridronic Acid which is sold under trade name Nerixia. Nerixia is only manufactured in Italy and has proven effective in not only treating CRPS, but curing it in a majority of patients with no major side effects or remission after years. Lora's excitement was palpable as she began perparing for the clinical trial, despite the chances of receiving the placebo. In preparation for the trial she had to wean herself from all pain medications. Only a day into it she was informed she was not a candidate for the trial due to also being diagnosed with neuropathy by the PA over-seeing admission to the trial. The symptoms of neuropathy include tingling and numbness and her reports could interfere with the trial results. It is important to note that this was a conflicting diagnosis with her original doctor's conclusion that CRPS-1 was her condition.
Nerixia is manufactured in Italy and approved for use in most European countries and Southeast Asian countries (under trade name Attila), but is only accessible to non-citizens in Italy. The process for drug approval in the United States is long and requires many trials, and rightfully so. However that means it could be multiple years before this drug is approved in the United States.
Our close family friend Chris Celestino used his work connections at his Google office in Zurich, Switzerland to locate a treatment facility in Bologna, Italy. The facility is willing to accept her as a patient and treat her with Nerixia. The facility can accept her as soon as she pays all costs for treatment in advance. That is why time is of the essence because her condition is only worsening and her options growing slimmer. Nerixia is the best hope she has to restore her life and get on with her dreams.
As one can imagine, a trip to Italy is not cheap, especially not when coupled with extensive medical expenses. Lora is a kind, selfless and loving person. She would never ask this for herself, so I am asking for her...Please, if you are able, help in any way you can. No amount is too small! All funds will go toward her stay at the facility and associated travel costs. If all you can afford is a prayer or thought for healing, that is equally appreciated! Lora and her husband, Clint, are so very ready to move forward with their lives and put this debilitating disease behind them. They, along with the rest of their family and friends, are all so grateful for the love and support they have and continue to receive! Much love and many many thanks!
I am writing on behalf of my sister-in-law, Lora. She has been diagnosed with a rare disease called Complex Regional Pain Syndrome (CRPS-1) or Reflex Sympathetic Dystrophy (RSD). To date it has mainly affected her left foot, but in the last few days it has begun to spread to her right. The effects are often dibilitating with constant and intense pain, which causes many sufferers to go on disability. She describes the pain as if someone has poured gasoline on her foot, lit her foot on fire and then proceded to rub sandpaper all over it. She has been to 6 different doctors, including the foremost specialist in our area. She is in physical therapy once a week and on morphine-level medications just so that she may function and continue to work.
Lora has further received a series of epidural style sympathetic nerve blocks and still found no relief. Most recently, she was screened and approved for a clinical trial to receive a drug called Neridronic Acid which is sold under trade name Nerixia. Nerixia is only manufactured in Italy and has proven effective in not only treating CRPS, but curing it in a majority of patients with no major side effects or remission after years. Lora's excitement was palpable as she began perparing for the clinical trial, despite the chances of receiving the placebo. In preparation for the trial she had to wean herself from all pain medications. Only a day into it she was informed she was not a candidate for the trial due to also being diagnosed with neuropathy by the PA over-seeing admission to the trial. The symptoms of neuropathy include tingling and numbness and her reports could interfere with the trial results. It is important to note that this was a conflicting diagnosis with her original doctor's conclusion that CRPS-1 was her condition.
Nerixia is manufactured in Italy and approved for use in most European countries and Southeast Asian countries (under trade name Attila), but is only accessible to non-citizens in Italy. The process for drug approval in the United States is long and requires many trials, and rightfully so. However that means it could be multiple years before this drug is approved in the United States.
Our close family friend Chris Celestino used his work connections at his Google office in Zurich, Switzerland to locate a treatment facility in Bologna, Italy. The facility is willing to accept her as a patient and treat her with Nerixia. The facility can accept her as soon as she pays all costs for treatment in advance. That is why time is of the essence because her condition is only worsening and her options growing slimmer. Nerixia is the best hope she has to restore her life and get on with her dreams.
As one can imagine, a trip to Italy is not cheap, especially not when coupled with extensive medical expenses. Lora is a kind, selfless and loving person. She would never ask this for herself, so I am asking for her...Please, if you are able, help in any way you can. No amount is too small! All funds will go toward her stay at the facility and associated travel costs. If all you can afford is a prayer or thought for healing, that is equally appreciated! Lora and her husband, Clint, are so very ready to move forward with their lives and put this debilitating disease behind them. They, along with the rest of their family and friends, are all so grateful for the love and support they have and continue to receive! Much love and many many thanks!
Organizer and beneficiary
Blair Ruark Small
Organizer
Winston-Salem, NC
Lora Myers
Beneficiary