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Interview with Pat Guerre: on Kneading Hope Organization, Rare Disease Day in DC, Scleroderma, and CRPS
Hello everyone!
Today we have a special treat as Pat Guerre, co-founder of the Kneading Hope Organization has agreed to an interview. Pat recently returned from Washington DC where he spent Rare Disease Week. We at abodyofhope blog are so grateful that Pat Guerre is opening up about his Rare Disease Day experiences, his art, and non-profit work.
I was introduced to Pat through his incredible wife, Gina Raring-Guerre, who many reading may already know. She was a member of my support group Living with RSD, and she has gone on to become a strong voice in the CRPS, Scleroderma, and Rare disease community, along with her partner and husband, Pat. I can’t wait for you to hear their story!
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Hello Pat! Welcome! It’s a pleasure to have you joining us, and filling us in on your work and latest trip to Washington.
1. Firstly, what is Kneading Hope?
Pat: I suppose I should go back a bit. In 2013, my wife Gina, who suffers from both RSD/CRPS and Scleroderma was down to a weight only someone on their death bed should be, and her doctors confirmed exactly that. Being an artist, I began painting 12″ X 12″ hearts to fill her room and share my love with her. They prescribed her medications we couldn’t afford, and her insurance would not cover them. That’s when our fundraising art project was born called “10,000 Hearts for Gina”.
In 2016, I submitted a work to Rare Disease Art and was awarded an Artistic Merit Award. I flew to Washington DC to be part of the reception, and it changed my life.
After my trip, I decided to participate in almost all of the events that the EveryLife Foundation had arranged for the week. I listened and learned about the rare disease community and all of their concerns. I still think about those who may or may not still be with us today. I remember parents so determined, yet afraid, trying to keep a brave face to hide their pain. It touched me completely. When we walked Capital Hill, a patient I was walking with started talking to me about patients like herself, the caregivers, and why we were all there together.
I got home from that trip changed.
I decided that after years of staying home and sharing my artwork with a few, I could do more. So with my wife Gina, and a few friends we started Kneading Hope to try and reach out. We don’t target the advocacy end of things, but the patients, caregivers, and families of people with rare diseases.
We have three main goals. Number one, awareness, and funding of other issues, through the 10,000 Hearts for Gina project, of RSD/CRPS and Scleroderma, as well as other rare diseases. Secondly, using art to raise awareness of all rare diseases through an online presence and art shows. And third, figuring out how to give caregivers some kind of respite.
We are new, we are learning, and we will continue, dedicated in this work. We also send parts of the 10,000 Hearts for Gina project out to patients, caregivers, and medical facilities and their staff to make people aware. Awareness is where it begins.
2. How did you get involved with Kneading Hope and advocacy?
I started Kneading Hope because I went to DC to show my art. There were so many people advocating and I was inspired by their dedication. I decided to go into the community based nonprofit. We didn’t start Kneading Hope as an advocacy group, we do however believe that knowing what’s happening in that realm, can only help educate, and let people know there is hope out there.
We feel that Kneading Hope’s purpose as well as financial commitments are better served in local endeavors and supporting other groups that do the advocacy. We advocate as individuals, and that is often a difficulty financially. But, If everyone focused on advocacy and no one went out into the community, I don’t feel people would be served as they need to be, so we are looking into community-based issues such as art therapies, caregiver support issues and respite for them, as well as art as a way to focus on the diseases and the stories behind it.
3. Why did you go to Washington DC for Rare Disease Week?
As I mentioned above, it is important to be informed, so as we go out into the community, we can let people know there are folks trying to help them. The info shared, not only on the legislative side, but also the medical and research side, is often overwhelming, but also important to understand. I also find that getting together with other organizations and networking with them brings all of us closer together to share ideas and thoughts to further all of our goals.
4. Did you meet with anyone of interest? If so, whom?
I have to say that this is kind of a funny question to me as I grew up in Los Angeles and have met many famous people. Both in film and music, so I have been raised to just realize people are people. It takes a lot for me to consider someone a person of importance, yet this year, as well as last year, I did feel there were people of importance I met.
Last year, it was Representative Brownley of California’s 26th district. It was amazing. As we talked I learned that she had recently lost a colleague to Scleroderma. It was a very close emotional conversation and she has been a close ally to the rare disease community since being on Capital Hill. That was impactful because she understood, at least half of, what Gina and I have been through.
This year was a bit different. There were two guys there who suffer from Freidreich’s Ataxia who were involved with a bike race called The Ataxian, which we watched the documentary of. These 2 guys, Kyle Bryant and Sean Baumstark, accomplished the impossible. They, along with 2 other team mates, did the Race Across America and rode 3,000 miles in less than 9 days.
Pat pictured center with stars of “The Ataxian” documentary
Their inspiration, motivation, laughter, and caring for everyone, was the biggest interest for me. It is folks like this, that unless you are familiar with their disease, you would never know about. They, and what they are doing, is why I go to DC. There are countless others that are of interest, and inspirational, and so full of ideas, courage and hope, it makes the whole trip worthwhile.
These along with the researchers, people in academia, as well as all others, including the artists at the Rare Artists Reception, are truly the ones I am most interested in and their stories, struggles, and determination to make a change. They far outweigh any person you might think is of interest on Capital Hill.
They are what keeps me going.
5. What was the highlight of your DC trip?
I honestly have to say that I always walk into situations with an open mind, not knowing what to expect. I think one thing will stand out, and yet it’s always something else that gets me. This trip was no exception. There were 2 things that really grabbed me that I can say were highlights.
The first was the Conference and discussion on Genetic research and Gene therapy at the NIH (National Institute of Health). Though Gina’s diseases are considered autoimmune diseases, the topics the panels spoke on were incredible. The speed that the research is advancing in is amazing and I was happy to see that one of Gina’s diseases, RSD/CRPS, is actually being studied at the NIH. They are looking into its genetic markers. It is very upcoming research and it seems the possibilities of early detection, possible treatments, and possibly cures, are on the edge of being discovered.
The second, was after the NIH conference, walking around the mall, in the rain, and happening upon The Disabled Veterans Memorial. Though it is intended for disabled war vets, the words written on that memorial spoke volumes after such an intense week. Two of my favorite quotes I read that night were, “It’s not what you have lost that counts, it’s what you do with what’s left,” and “We start by not thinking so much anymore about what we have lost. You must think about what you have left…and what you can do with it.”
Disabled Veterans Memorial Plaque
6. What is something you learned in Washington that will likely impact your work this year?
I remember my first conference last year in DC. We sat at a table, and a gentleman named Tony Pena, who was the Vice President of Cure AHC asked if we were new to the conference. He obviously knew we were new there, as I was like a deer in the headlights of an oncoming car. He so gently said that everyone would guide us through it and not to worry because they had been doing this for years, and they still didn’t know everything.
That is what makes being there so important. Every year there are new issues. New legislation. New ideas. And most importantly, new people. Yet this year I learned more than anything- we can’t do this alone. We all need to work together, collaborate, support and hold each other up. I truly felt this year, that all of us are not a rare disease community, but rather a rare disease family. We all have our own issues, but together, speaking as one group, we are truly a force to be heard. Our needs are not individual, but are all important and need to be addressed as one voice because it is hard to ignore one disease or the other when we all speak as one.
7. In Your Opinion, what is the greatest challenge the rare disease community or patients with rare diseases face today?
I have to say that the challenges are great and cannot be addressed with one simple answer. There are over 7,000 rare diseases and over 30 million people in the US diagnosed with a rare disease. Some have large groups of people affected, still less than 200,000 (in each condition), and some with only 3 or 4 people per condition. This causes some major hurdles and challenges in the rare disease community.
The 1st thing that comes to mind for me, is diagnosis. With our country being so large, and so few experts in any one field of rare diseases, it is a critical need to get proper diagnosis. This is often the most difficult task as far as the medical end of things go. Doctors may not be aware of a disease and misdiagnose it. Patients that do have doctors who know and admit it is beyond their knowledge may recommend the closest experts, although those experts may have no idea of the disease. This can go on for years with diagnosis after diagnosis and never actually getting to the actual diagnosis.
Early diagnosis and proper treatment, if there is any, is critical for health and quality of life. One must remember that with over 7,000 rare diseases, only 5% have FDA approved drugs or treatment. With that being said, early treatment of the symptoms can help tremendously.
Next is the size of the patient pool of any 1 rare disease. It is not hard to see how breast cancer gets huge publicity and funding and something like Pemphigus or Alpha 1, or even GoodPasture Syndrome is not ever heard of in the main stream. There are hundreds if not thousands of diseases that no one has heard of. Awareness of diseases is of the utmost importance, in my opinion, because the more people that are aware of it, the more they can gain support, and those willing to fund research.
8. If Someone reading would like to get involved in rare disease awareness or chronic illness advocacy, how can they get plugged in?
There are many great organizations that do advocacy. On the rare disease side, NORD (National Organization of Rare Diseases) is an amazing group. There is also Global Genes and The EveryLife Foundation that do great work. Many individual groups specific to a disease are often great resources as well. Many of the issues these groups advocate for can have incredible effects for many diseases, not just rare diseases.
I also would say that getting involved with a support group, whether online or in your community is also beneficial. I actually got involved because someone sent the info for the Rare Disease Artist’s contest which I had never heard of before. Through that interaction, I was exposed to so many amazing groups.
If you are so inclined, form your own group and research state or federal issues. Spread the word to those in your group/s. Ask questions and don’t be afraid to ask other groups that you may not be affiliated with. Most people are more than willing to give you info or advice. I always say that the worst info or advice is that which you are not aware of.
Disabled Veteran’s Memorial
9. What can the average person do to help make a difference in policies effecting health?
From my own interactions with people in congress and their staff, as well as on the state level, it is actually reaching out to them. I used to think writing a letter and never getting a response meant it was forgotten, but after talking with these folks, you learn that they are dealing with hundreds of issues. You need to let them know, or remind them, as they will say, the issues are real and need to be dealt with.
I am a big proponent of the Rare Disease Legislative Caucus and would love to see every senator and congressperson in Washington become a member. Not only will it show how important the issues of the rare disease community are, it will also show how a bipartisan, bicameral committee can get together. Write a letter to your senator and congressperson and either thank them or encourage them to join the caucus. It is growing and is impressive. The link to see if your senator or congressperson is on it can be found here http://rareadvocates.org/rarecaucus/#tab-id-1.
10. What is your next venture?
Since Kneading Hope is a new venture, we are looking to expand our reach and impact. For the first time, we will be showing the 10,000 Hearts for Gina project and raising funds for 2 organizations. We are also trying to start up a couple of small local programs. One will be involving art therapies, and for the other, I have started attending a caregiver support group to find out how we can offer respite to caregivers and meet caregiver’s needs. This is an important part of our work.
We also intend to work with another organization to start an online gallery, and perhaps curate art shows of work from all aspects of the rare disease community to raise awareness through stories and works, as well as raise funds through awareness and research projects.
11. What would you like to tell us about 10,000 Hearts for Gina?
I just want you all to know that this has been an incredible journey. I have been at it for 5 years now and could never have imagined where it has taken me. It is something I share with everyone. I really think that doing something bigger than you ever could imagine is what it is all about. Sharing the works with patients, caregivers, hospitals and doctors has been about the most emotional thing I have ever done and will continue to do through Kneading Hope.
It has been an honor to be able to share some love, light, and hope through the work. Sometimes it is painstakingly difficult as every work brings thoughts of those suffering, those lost, and those who haven’t been diagnosed, but it is all of them, and their strength, that keeps me going. It truly is their project, whether they know it or not.
Would you like to leave us with anything else?
I just want to tell everyone that you matter. Your voice matters, so never be afraid to speak up. Kneading Hope is dedicated to doing what we can for as many people as we can so please reach out to us if you have any requests or ideas. We are building this organization and want your feedback. Also, if you know someone who is down and out and could use a little light, love, and hope, don’t be afraid to ask us to send them a heart. We will try and get out as many as we can under our circumstances. Sometimes it might just change someone’s outlook and let them know they are not alone in their struggles.
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Please support Pat and Gina Raring-Guerre by following and liking their pages, and thank you for sharing to help them spread the word!
Facebook: https://www.facebook.com/KneadHope/
Instagram: @KneadingHope1
website: kneadinghope.org
email: info@kneadinghope.org
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A Voice Unheard: Author Interview with Chronic Pain advocate, Jane Gonzales
I am so happy to welcome, author, poet, blogger, and advocate for the chronic pain community, Mary Jane Gonzales!
I was given the great honor of being asked to contribute a piece for her book, A Voice Unheard. After reading it in its entirety, I immediately asked Ms. Gonzales for an interview! I know it will impact every reader, disabled and abled alike.
Congratulations on publishing your 10th book, A Voice Unheard.
You have very generously allowed your powerful poetry to be shared here on a Body of Hope in the past, but this is your first interview here. I’m excited! Shall we begin?
1. Did you do anything special to celebrate your 10th book release? or Do you have a traditional book completion ritual?
Well, it’s funny you would ask, because you had asked me that previously and my answer was no (I wasn’t planning anything special). But it started me thinking that this is a special time that will never come again. So, with your inspiration, I decided to have an event on Facebook. As to a “traditional book completion ritual”, my response would be “breathe”!
2. How long have you been living with chronic illness? Would you mind sharing a little about your diagnosis?
This summer will be thirty-one years that I’ve had RSD, but it was undiagnosed for eighteen years.
3. Aside from writing, what do you enjoy doing in your free time?
My pastimes would be reading, writing and crafting (especially, card making and scrap booking).
4. It’s clear you have a talent for soul stirring, magnetic writing, but why are you passionate to write for the chronic illness audience?
Because that’s where I live; in a community with others like me, who understand me and don’t see me as “different” or “weird”. Plus, I want them/ others to know they are not alone and they are not crazy, which is how this syndrome can make you feel.
5. How was compiling A Voice Unheard different from writing a book like In the Blink of an Eye?
Well In the Blink of An Eye was a personal memoir written about me, and A Voice Unheard was written about a community/ involving members of the community. I found that to be a bit scary, actually.
Another difference between the two is that, when I wrote In the Blink of An Eye, I had already dealt with the issues and was reconciled to the situation. But that was not the case for where I was at when I wrote A Voice Unheard. And, for that reason, I couldn’t do it justice. I had the inspiration but I couldn’t write it in a way that would honor God. Therefore, it took me a year to write it, which is ironic because it’s one of my shortest books. Compiling the stories was easy and exciting because every story fit perfectly with what I myself had written. When that happens, you know it was meant to be!
Another difference would be that every book I had written prior had the stories first; then, the chapter titles later. With A Voice Unheard, all the chapter titles were inspired first and the stories came later.
6. How would you describe your personal writing process?
(For example, are you research driven, logistic, intuitive, spiritually moved, or other. Please explain.)
I think I’m all of these things to a degree, but, above all, spiritually moved. I can’t just pick a topic to write about. I have to be inspired, in order to write.
7. What is your favorite part of being an author?
My favorite part of being an author is the feeling I get when the inspiration is flowing. I also enjoy editing, which is probably an understatement, since I’m drawn/gravitate to it.
What is your least favorite part of being an author?
My least favorite part is marketing i.e. self promotion.
8. In your new book, you described the world we live in today as “a microwave society.” This is a great terminology! For those who haven’t yet read your book, can you explain your meaning, and how this current mentality effects chronic illness survivors and our loved ones?
What I meant was, in our society, we want everything quick. We don’t want to wait for anything. So if someone gets sick or injured, and it continues, there’s no patience or tolerance for a lack of healing.
9. In A Voice Unheard, you share very personal accounts from fellow chronic illness sufferers. Why did you go out of your way to bring these stories into the light?
Because they need to be told!
10. In your new book, you cover practical but serious topics such as the importance of quality care giving, which you are always a strong advocate for, and you discuss hot-button subjects like pain management. Why did you feel this book was important to write now?
Because I feel the issues are critical and what’s happening is wrong. It’s one thing to have a problem, it’s another thing to have no voice, no say in the situation.
I wrote it now because I couldn’t be silent anymore.
11. Other than those who live with chronic pain and chronic illness, who else do you hope reads A Voice Unheard, and why?
I hope it is read by all. The disabled, to feel supported. The abled, to be made aware. Ultimately, to make a difference.
A Voice Unheard is available for your Nook, tablet, or download as PDF ebook at Smashwords.
Interview was first published April, 2016
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Author Interview & Book Giveaway! But God, wouldn’t I be more useful to You if I were Healthy?
1. Did you do anything special to celebrate the release of your first book? ~or~ How did you reward yourself when you completed writing “But God, wouldn’t I be more useful to you if I were healthy?”
2. Aside from writing, how do you enjoy spending your free time? (hobbies/activities)
3. How would you describe your personal writing process? (Are you research-driven, methodical, intuitive, spiritually motivated, etc. Please explain).
4. Thus far, what is your favorite aspect of becoming a published author? (designing the cover of your book, the writing process itself, doing interviews like these, etc.)
What is your least favorite aspect of becoming a published author? (the editing process, marketing, doing interviews like these, etc.)
I greatly dislike wearing all of the hats in the publishing process. I was not able to pay for help for any part of my book, so I edited it myself, though I am far from an editor. I also designed the book cover, though design is not my strong point. I would much prefer to focus on my strengths and get help with the rest.
5. “Resting as an act of faith” is one part of your book I felt was particularly inspired, and is wisdom that both well and chronically ill individuals can benefit from. Can you explain what in your own life lead you to write about resting by faith?
For so long I tried to maintain the same life I had always lived even though chronic pain made this difficult. I became burned out, and my health started to regress because I was doing more than my body could handle. I maintained all my responsibilities because I felt guilty about giving them up. But I finally realized that letting go of what was physically harmful to my body was not something to feel guilty about. I realized that I was not stewarding my body well, and that being faithful with the body I had been given meant letting go of things that were good but harmful to me. It was a freeing realization and allowed me to better serve in the areas that I didn’t give up.
6. One of your readers, Ginny asks: Did you have any hesitation in sharing the personal thoughts expressed in your book? (she adds that she can’t wait for your next book!)
Yes! My book was more personal than much of my blog. I poured out some of my deepest fears and failures. Releasing the book left me feeling so vulnerable. But hearing readers say that they could relate helped a lot. It all felt worth it in the end.
7. Blog follower, Max asks: What was your greatest challenge in writing this book?
8. Because I follow your blog LifeinSlowMotionblog.com, I know that you live with chronic pain. How has Chronic Pain influenced you or inspired you to write more often, or has it?
Before chronic pain, I would not have called myself a writer. It was chronic pain that gave me something important to write about. As I looked for answers to my own questions, I found limited resources on chronic pain from a Christian perspective. Many of the resources I did find were either lacking in depth or didn’t seem to understand the actual experience of chronic pain. As both a Christian counselor and an individual with chronic pain, I felt able to address the topic with both depth and insight. If not me, who else would do it? That is what led me to writing.
9. “Giving out of a poverty of health” was one of my favorite pieces of wisdom you shared in your book. Can you give a brief example (or explanation) of giving from a poverty of health?
10. Can you give us a hint of the focus of your next book?
How to win a free signed copy or e-book?
To participate in the random book give-away drawing, in the comments section below, let us know:
1. Where you found the link to this interview
2. Tell us where on social media you are sharing this link
I will contact the winner Friday, Aug. 5th! Good luck, and thank you for reading!
But God, Wouldn’t I be More Useful to You if I Were Healthy? is Available to purchase on Amazon in paperback or ebook.
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Interview with author Mary Jane Gonzales and book give away!
I am so happy to welcome, author, poet, blogger, and advocate for chronic illness awareness, Mary Jane Gonzales! Congratulations on publishing your 10th book, A Voice Unheard.Because you are doing give-aways on your book event page all week, I thought we would join in on the fun here as well! The first person who comments below on this interview will receive your newly released book! (If you are the first to comment, I will message you to make arrangements).(I had the great privilege of reading A Voice Unheard recently, and I immediately asked Ms. Gonzales for an exclusive interview. I know this book will impact every single reader, both the disabled, and abled alike.)You have very generously allowed your powerful poetry to be shared here on aBodyofHope in the past, but this is your first interview here (and mine as well). I’m excited! Shall we begin?
1. Did you do anything special to celebrate your 10th book release? or Do you have a traditional book completion ritual?Well, it’s funny you would ask, because you had asked me that previously and my answer was no (I wasn’t planning anything special). But it started me thinking that this is a special time that will never come again. So, with your inspiration, I decided to have an event on Facebook. As to a “traditional book completion ritual”, my response would be “breathe”!
2. How long have you been living with chronic illness? Would you mind sharing a little about your diagnosis?This summer will be thirty-one years that I’ve had RSD, but it was undiagnosed for eighteen years.
3. Aside from writing, what do you enjoy doing in your free time?My pastimes would be reading, writing and crafting (especially, card making and scrap booking).
4. It’s clear you have a talent for soul stirring, magnetic writing, but why are you passionate to write for the chronic illness audience?Because that’s where I live; in a community with others like me, who understand me and don’t see me as “different” or “weird”. Plus, I want them/ others to know they are not alone and they are not crazy, which is how this syndrome can make you feel.
5. How was compiling A Voice Unheard different from writing a book like In the Blink of an Eye?Well In the Blink of An Eye was a personal memoir written about me, and A Voice Unheard was written about a community/ involving members of the community. I found that to be a bit scary, actually.Another difference between the two is that, when I wrote In the Blink of An Eye, I had already dealt with the issues and was reconciled to the situation. But that was not the case for where I was at when I wrote A Voice Unheard. And, for that reason, I couldn’t do it justice. I had the inspiration but I couldn’t write it in a way that would honor God. Therefore, it took me a year to write it, which is ironic because it’s one of my shortest books. Compiling the stories was easy and exciting because every story fit perfectly with what I myself had written. When that happens, you know it was meant to be!Another difference would be that every book I had written prior had the stories first; then, the chapter titles later. With A Voice Unheard, all the chapter titles were inspired first and the stories came later.
6. How would you describe your personal writing process?(For example, are you research driven, logistic, intuitive, spiritually moved, or other. Please explain.)I think I’m all of these things to a degree, but, above all, spiritually moved. I can’t just pick a topic to write about. I have to be inspired, in order to write.
7. What is your favorite part of being an author?My favorite part of being an author is the feeling I get when the inspiration is flowing. I also enjoy editing, which is probably an understatement, since I’m drawn/gravitate to it.What is your least favorite part of being an author?My least favorite part is marketing i.e. self promotion.
8. In your new book, you described the world we live in today as “a microwave society.” This is a great terminology! For those who haven’t yet read your book, can you explain your meaning, and how this current mentality effects chronic illness survivors and our loved ones?What I meant was, in our society, we want everything quick. We don’t want to wait for anything. So if someone gets sick or injured, and it continues, there’s no patience or tolerance for a lack of healing.
9. In A Voice Unheard, you share very personal accounts from fellow chronic illness sufferers. Why did you go out of your way to bring these stories into the light?Because they need to be told!
10. In your new book, you cover practical but serious topics such as the importance of quality care giving, which you are always a strong advocate for, and you discuss hot-button subjects like pain management. Why did you feel this book was important to write now?Because I feel the issues are critical and what’s happening is wrong. It’s one thing to have a problem, it’s another thing to have no voice, no say in the situation.I wrote it now because I couldn’t be silent anymore.
11. Other than those who live with chronic pain and chronic illness, who else do you hope reads A Voice Unheard, and why?I hope it is read by all. The disabled, to feel supported. The abled, to be made aware. Ultimately, to make a difference.
aBodyofHope 