Help Jeni Duncan Reclaim Her Voice
Donation protected
The Short Version:
On June 13th, 2017 Jeni Duncan had a hemorrhagic stroke that occurred directly over the speech center on her brain on the left side. She lost the use of her right side and her ability to speak. Through hundreds of hours of therapy (occupational, speech, and physical) Jeni has regained gross motor control and some speech. She continues to battle aphasia (loss of ability to express speech) and apraxia (inability to perform particular actions intentionally).
There is currently no FDA approved drug available to improve recovery of function in stroke patients.
However, a doctor in Boca Raton, FL has pioneered a treatment using a drug called etanercept (FDA approved to treat rheumatoid arthritis since 1998) which has shown tremendous potential in having immediate and lasting positive impact on symptoms in stroke and traumatic brain injury victims. Administration of the drug for treatment of stroke requires a new technique called perispinal injection. With the treatment being new in both application and delivery, insurance will not pay for it. One injection costs $7000, not including the costs associated with the trip, aftercare, etc.
We are raising money to get one of these injections for Jeni, and know that even the smallest donations can help move us towards our goal of Jeni reclaiming her voice.
My Jeni
Imagine your most outgoing, independent, friendly, lighthearted, gregarious friend… Can you see them in your mind? (No cheating if you are looking directly at them!) Do you see their smile? Can you hear their voice as they encourage you? Can you see them rushing around doing four things at once; bringing strangers together, helping get things done, bringing smiles to everyone’s faces?
For me, that person is Jeni.
Now imagine that smile wiped away; replaced by facial muscles they can’t control.
Imagine that voice struggling to form basic words; trapped by the inability to communicate as well as they used to.
Imagine them imprisoned by a form they no longer have full control over, unable to express their huge personalities.
Imagine them having to make herculean efforts to stand up, walk, dress unassisted.
That is my Jeni now… and I want her back!
I met Jeni and her now husband Richard in 2001. I was attending one of those meet-up type events, where interest in a shared topic is supposed to make it easier to connect with strangers (not one of my specialties!) I sat for a while, nursing a Shirley Temple and my own fear of not being accepted by others. I had decided I would finish my drink and leave when this bitty little woman came over to me and said something to the effect of “Since you didn’t come talk to us, I decided we would come talk to you!”
In the 17 years since that fateful day, Jeni has been my rock, my compass, my guiding light, my mentor, my humanity, and always, always, always my inspiration to be the very best parts of me. Jeni has never once told me what to do or how to do it; what she HAS done is live her life brightly, and allowed me to be some small part of it.
Jeni showed me it is possible to be my most authentic self and still be accepted.
Jeni showed me it is possible to give voice to my thoughts, needs, and fears; and still be worthy of love.
Jeni taught me how to take ownership of myself, my life, my direction, and my purpose.
Jeni taught me how to own my flaws and improve them.
Jeni taught me how to own my gifts, and how to nurture, share, and protect them.
Jeni’s strength is something I have literally plagiarized in my own times of weakness or fear.
Jeni is both the teacher and the student I strive to live like.
Jeni is the example of grace, beauty, civility, service, consideration, determination, and passion I aspire to.
If you know Jeni, you already know all of this about her (and more). If you don’t, let me share a bit more.
My mother lives in Florida and I usually don’t. Many years ago, my mother was adopted by a cat named Sophie, who butted her way determinedly into my mother’s life and heart. As cats sometimes do, when she got old and was not doing well anymore, she escaped and disappeared. My mother searched everywhere for Sophie, and eventually found her dead; floating in the filthy water of a very steep drainage ditch. Due to physical limitations, my mother could not retrieve Sophie. No one she was able to reach was able to help. I have heard my mother cry maybe a handful of times in my life, but she called me crying, unable to handle the thought of Sophie spending the night in that horrible, disgusting ditch.
All it took was one phone call for Richard and Jeni to drop everything, go to a woman they had never met, buy tools, and fish a dead cat out of a nasty, dangerous ditch so my mother could bury her.
When my mother had her heart attack, I flew to Florida with no plan. Richard and Jeni gave me a key to their house, a key to their car, and told me to do whatever was necessary for me and my family, for as long as I needed.
Jeni has a personality so big and a strength so mighty, I sometimes forget that she is tiny, human, and as fragile as the rest of us.
I now live 1,791 miles from Richard and Jeni. My inability to be there for her every day absolutely kills me. I am not in a position right now where I can drop my life and go to them without being more burden than help. However, this I can do:
What I can’t offer in person I will offer in time, energy, and love. After some poking and prodding and if-ing and but-ing, they have agreed to let me set up this GoFundMe on their behalf. There is a treatment (mentioned above) that we are confident can have as much of an impact for Jeni as it has for the many stroke/TBI victims before her (scientific details in below.) Richard and Jeni are intelligent, careful, detailed, thorough, and fiercely independent. The treatment is not being pursued lightly, nor blindly. The acceptance of this fundraiser is not without the swallowing of a lot of pride (and reminders that the many people they have helped, supported, and loved along the way have a right to try to give something back).
Jeni has been fighting a long, hard battle to recover her mobility, speech, and independence. It will be longer still, and there will be more hurdles along the way.
Jeni is too fierce to be silenced; will you help her reclaim her voice?
Why We Need Your Help
Richard and Jeni are intertwined in a way that is hard to describe. It is difficult to talk (or think) about one without the other. While trying to find the right words, I realized they are not like two sides of a coin; Richard and Jeni are more like the facets of a rare gem. In some places, they are the same; in some places they are different. Together what they make is strong, and beautiful, and something many of us covet for ourselves.
On June 13th, 2017, Jeni suffered a hemorrhagic stroke that occurred directly over the speech center of the left side of her brain. She lost all movement in her right side (including her face) and was not capable of speaking or making sounds for several weeks. The past nine months have been filled with hospitals, tests, speech therapy, physical therapy, occupational therapy, specialists,
She has been left with Aphasia and Apraxia to overcome. It is a long and stressful process to bring about positive change, and she has been working hard to achieve some reasonable communication pathways; speech, typing (slow and frustrating) and she can write her name in cursive now.
The Plan
The primary goal of this fundraiser is to help with the costs of a single perispinal injection of etanercept for Jeni.
Funds over our goal will be used to cover continuing treatment.
The Science
I am not a scientist, nor am I in the medical field, so I will provide information from people who are.
Information on aphasia from the National Institutes of Heath’s US National Library of Medicine:
aphasia
Information on apraxia from the National Institutes of Heath’s US National Library of Medicine:
apraxia
Information on stroke recovery from the National Stroke Association:
Stroke Recovery
Information on etanercept from Wikipedia:
Etanercept
Pharmaceutical Sales
Scientific Rationale and Current Evidence for this treatment from The National Center for Biotechnology Information
Article 1
Things I think are of note in this article:
A small study was conducted in 2011 with three stroke patients treated by perispinal injection of etanercept 13 months, 25 months, and 36 months after their strokes. Results were almost immediate and positive.
A larger study was conducted in 2012 with 617 stroke patients and 12 traumatic brain injury patients. Results were again almost immediate and positive.
This paper breaks down all the pieces of what is considered important in such studies, and how the results of the two studies performed in those areas. One of the things I found most impressive is how consistent the positive impact was. Another is the p value.
P value is a measure of the probability of something happening by random chance. A p value of .05 is considered “statistically relevant” and essentially (in really, really oversimplified words) means the scientists are 95% confident that the results observed were caused by the thing being tested and not by random chance.
From this article:
“Statistically significant improvements in motor impairment, sensory impairment, cognition, aphasia, pain, and other areas of neurological dysfunction were noted, with p values consistently less than 0.001 [emphasis added] in the 617-patient stroke cohort treated with perispinal etanercept.”
.001
That is 50 times more rigorous than the standard scientific benchmark for relevance!
This drug is not new and there is tons of research on it already.
It is the highest grossing drug for the company that makes it.
The use and method of delivery are different, which means more studies are needed and more cases need to be reviewed, but early studies have been extremely positive.
Many critics state their primary objection is that no double-blind randomized placebo-controlled clinical trials have been performed, therefore it cannot be definitively stated that the results are not due to “placebo effect”. It appears to still be true that a double-blind randomized placebo-controlled clinical trial has not been completed for stroke patients. However, there has now been one with Alzheimer’s patients, (which Dr. Tobinick has been working with longer than stroke patients) also showing positive results.
The published paper on that study is free here:
Article 2
It is possible that a double-blind randomized placebo-controlled clinical trial has been completed (or started) for stroke patients, but I do not have any data on that just yet (not having access to paid medical journals is a bit of a limitation.)
Finally, (while not scientific) there are several youtube videos, as well as two Australian news stories ["A Matter of Minutes” from Sunday Night in Australia and “Reverse Stroke” from 60 Minutes Australia] that follow several people before and after they have received this treatment.
A final note from me
It may seem unfair to credit Jeni with the bulk of the impact Richard and Jeni, together, have had on me. I know Richard has absolutely helped influence who Jeni is today. Richard has helped me to feel more comfortable being loved, cared for, safe. He has also been my mentor and my friend. Richard is family in all but blood. But I must also admit I have never wished to be like Richard. He is more often the ruler by which I measure others in my life; Jeni is a ruler I use to measure myself. So please do not think too unkindly of me. They both have more value to me than any amount I could pay.
On June 13th, 2017 Jeni Duncan had a hemorrhagic stroke that occurred directly over the speech center on her brain on the left side. She lost the use of her right side and her ability to speak. Through hundreds of hours of therapy (occupational, speech, and physical) Jeni has regained gross motor control and some speech. She continues to battle aphasia (loss of ability to express speech) and apraxia (inability to perform particular actions intentionally).
There is currently no FDA approved drug available to improve recovery of function in stroke patients.
However, a doctor in Boca Raton, FL has pioneered a treatment using a drug called etanercept (FDA approved to treat rheumatoid arthritis since 1998) which has shown tremendous potential in having immediate and lasting positive impact on symptoms in stroke and traumatic brain injury victims. Administration of the drug for treatment of stroke requires a new technique called perispinal injection. With the treatment being new in both application and delivery, insurance will not pay for it. One injection costs $7000, not including the costs associated with the trip, aftercare, etc.
We are raising money to get one of these injections for Jeni, and know that even the smallest donations can help move us towards our goal of Jeni reclaiming her voice.
My Jeni
Imagine your most outgoing, independent, friendly, lighthearted, gregarious friend… Can you see them in your mind? (No cheating if you are looking directly at them!) Do you see their smile? Can you hear their voice as they encourage you? Can you see them rushing around doing four things at once; bringing strangers together, helping get things done, bringing smiles to everyone’s faces?
For me, that person is Jeni.
Now imagine that smile wiped away; replaced by facial muscles they can’t control.
Imagine that voice struggling to form basic words; trapped by the inability to communicate as well as they used to.
Imagine them imprisoned by a form they no longer have full control over, unable to express their huge personalities.
Imagine them having to make herculean efforts to stand up, walk, dress unassisted.
That is my Jeni now… and I want her back!
I met Jeni and her now husband Richard in 2001. I was attending one of those meet-up type events, where interest in a shared topic is supposed to make it easier to connect with strangers (not one of my specialties!) I sat for a while, nursing a Shirley Temple and my own fear of not being accepted by others. I had decided I would finish my drink and leave when this bitty little woman came over to me and said something to the effect of “Since you didn’t come talk to us, I decided we would come talk to you!”
In the 17 years since that fateful day, Jeni has been my rock, my compass, my guiding light, my mentor, my humanity, and always, always, always my inspiration to be the very best parts of me. Jeni has never once told me what to do or how to do it; what she HAS done is live her life brightly, and allowed me to be some small part of it.
Jeni showed me it is possible to be my most authentic self and still be accepted.
Jeni showed me it is possible to give voice to my thoughts, needs, and fears; and still be worthy of love.
Jeni taught me how to take ownership of myself, my life, my direction, and my purpose.
Jeni taught me how to own my flaws and improve them.
Jeni taught me how to own my gifts, and how to nurture, share, and protect them.
Jeni’s strength is something I have literally plagiarized in my own times of weakness or fear.
Jeni is both the teacher and the student I strive to live like.
Jeni is the example of grace, beauty, civility, service, consideration, determination, and passion I aspire to.
If you know Jeni, you already know all of this about her (and more). If you don’t, let me share a bit more.
My mother lives in Florida and I usually don’t. Many years ago, my mother was adopted by a cat named Sophie, who butted her way determinedly into my mother’s life and heart. As cats sometimes do, when she got old and was not doing well anymore, she escaped and disappeared. My mother searched everywhere for Sophie, and eventually found her dead; floating in the filthy water of a very steep drainage ditch. Due to physical limitations, my mother could not retrieve Sophie. No one she was able to reach was able to help. I have heard my mother cry maybe a handful of times in my life, but she called me crying, unable to handle the thought of Sophie spending the night in that horrible, disgusting ditch.
All it took was one phone call for Richard and Jeni to drop everything, go to a woman they had never met, buy tools, and fish a dead cat out of a nasty, dangerous ditch so my mother could bury her.
When my mother had her heart attack, I flew to Florida with no plan. Richard and Jeni gave me a key to their house, a key to their car, and told me to do whatever was necessary for me and my family, for as long as I needed.
Jeni has a personality so big and a strength so mighty, I sometimes forget that she is tiny, human, and as fragile as the rest of us.
I now live 1,791 miles from Richard and Jeni. My inability to be there for her every day absolutely kills me. I am not in a position right now where I can drop my life and go to them without being more burden than help. However, this I can do:
What I can’t offer in person I will offer in time, energy, and love. After some poking and prodding and if-ing and but-ing, they have agreed to let me set up this GoFundMe on their behalf. There is a treatment (mentioned above) that we are confident can have as much of an impact for Jeni as it has for the many stroke/TBI victims before her (scientific details in below.) Richard and Jeni are intelligent, careful, detailed, thorough, and fiercely independent. The treatment is not being pursued lightly, nor blindly. The acceptance of this fundraiser is not without the swallowing of a lot of pride (and reminders that the many people they have helped, supported, and loved along the way have a right to try to give something back).
Jeni has been fighting a long, hard battle to recover her mobility, speech, and independence. It will be longer still, and there will be more hurdles along the way.
Jeni is too fierce to be silenced; will you help her reclaim her voice?
Why We Need Your Help
Richard and Jeni are intertwined in a way that is hard to describe. It is difficult to talk (or think) about one without the other. While trying to find the right words, I realized they are not like two sides of a coin; Richard and Jeni are more like the facets of a rare gem. In some places, they are the same; in some places they are different. Together what they make is strong, and beautiful, and something many of us covet for ourselves.
On June 13th, 2017, Jeni suffered a hemorrhagic stroke that occurred directly over the speech center of the left side of her brain. She lost all movement in her right side (including her face) and was not capable of speaking or making sounds for several weeks. The past nine months have been filled with hospitals, tests, speech therapy, physical therapy, occupational therapy, specialists,
She has been left with Aphasia and Apraxia to overcome. It is a long and stressful process to bring about positive change, and she has been working hard to achieve some reasonable communication pathways; speech, typing (slow and frustrating) and she can write her name in cursive now.
The Plan
The primary goal of this fundraiser is to help with the costs of a single perispinal injection of etanercept for Jeni.
Funds over our goal will be used to cover continuing treatment.
The Science
I am not a scientist, nor am I in the medical field, so I will provide information from people who are.
Information on aphasia from the National Institutes of Heath’s US National Library of Medicine:
aphasia
Information on apraxia from the National Institutes of Heath’s US National Library of Medicine:
apraxia
Information on stroke recovery from the National Stroke Association:
Stroke Recovery
Information on etanercept from Wikipedia:
Etanercept
Pharmaceutical Sales
Scientific Rationale and Current Evidence for this treatment from The National Center for Biotechnology Information
Article 1
Things I think are of note in this article:
A small study was conducted in 2011 with three stroke patients treated by perispinal injection of etanercept 13 months, 25 months, and 36 months after their strokes. Results were almost immediate and positive.
A larger study was conducted in 2012 with 617 stroke patients and 12 traumatic brain injury patients. Results were again almost immediate and positive.
This paper breaks down all the pieces of what is considered important in such studies, and how the results of the two studies performed in those areas. One of the things I found most impressive is how consistent the positive impact was. Another is the p value.
P value is a measure of the probability of something happening by random chance. A p value of .05 is considered “statistically relevant” and essentially (in really, really oversimplified words) means the scientists are 95% confident that the results observed were caused by the thing being tested and not by random chance.
From this article:
“Statistically significant improvements in motor impairment, sensory impairment, cognition, aphasia, pain, and other areas of neurological dysfunction were noted, with p values consistently less than 0.001 [emphasis added] in the 617-patient stroke cohort treated with perispinal etanercept.”
.001
That is 50 times more rigorous than the standard scientific benchmark for relevance!
This drug is not new and there is tons of research on it already.
It is the highest grossing drug for the company that makes it.
The use and method of delivery are different, which means more studies are needed and more cases need to be reviewed, but early studies have been extremely positive.
Many critics state their primary objection is that no double-blind randomized placebo-controlled clinical trials have been performed, therefore it cannot be definitively stated that the results are not due to “placebo effect”. It appears to still be true that a double-blind randomized placebo-controlled clinical trial has not been completed for stroke patients. However, there has now been one with Alzheimer’s patients, (which Dr. Tobinick has been working with longer than stroke patients) also showing positive results.
The published paper on that study is free here:
Article 2
It is possible that a double-blind randomized placebo-controlled clinical trial has been completed (or started) for stroke patients, but I do not have any data on that just yet (not having access to paid medical journals is a bit of a limitation.)
Finally, (while not scientific) there are several youtube videos, as well as two Australian news stories ["A Matter of Minutes” from Sunday Night in Australia and “Reverse Stroke” from 60 Minutes Australia] that follow several people before and after they have received this treatment.
A final note from me
It may seem unfair to credit Jeni with the bulk of the impact Richard and Jeni, together, have had on me. I know Richard has absolutely helped influence who Jeni is today. Richard has helped me to feel more comfortable being loved, cared for, safe. He has also been my mentor and my friend. Richard is family in all but blood. But I must also admit I have never wished to be like Richard. He is more often the ruler by which I measure others in my life; Jeni is a ruler I use to measure myself. So please do not think too unkindly of me. They both have more value to me than any amount I could pay.
Organizer
Brooke Zeno
Organizer
Pinellas Park, FL
