Interview with Pat Guerre: on Kneading Hope Organization, Rare Disease Day in DC, Scleroderma, and CRPS
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!
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.
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.”
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.
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.
Please support Pat and Gina Raring-Guerre by following and liking their pages, and thank you for sharing to help them spread the word!
Just to have a diagnosis, you’d accept even the worst titles. You dream there will some day be a label for the madness eating away at your body and your life.
I began to feel like less of a person and more like a medical chart. The worse I became, the less interested doctors were in treating me. My value as a person was undermined…
If trying to regain your health has become your priority, do not listen to anyone doubting you. You are trying to save your own life. And your life is worth fighting for! You must be aggressive. Giving up is not an option.
You are not the words on a medical chart. You are not a list of symptoms, and your name is not a condition. You are not your medical history, or your pain level from 1-10. You might be in the habit of talking about matters of health, but please don’t forget about the you who has never left. You haven’t diverted from your journey. You’re the person who made you into the fighter that you are today. The unique, beautiful, lovable, sometimes goofball you. You are the only YOU this world has.
YOU are rare.
We do have labels which help us find each other, support one another, and build community. We can fight together as warriors with a united cause. We can be identified by “chronically ill,” “rare disease” and “spoonie.”
Article also published on The Mighty.
Poet Kristen Braatz Eiden shared this with us in honor of the passing of her beloved friend, and fellow poet Mary Jane Gonzales. Thank you, Kristen for sharing your beautiful and poignant poem. When I read your heartfelt poetry, it will always remind me of Jane ❤
The honest truth…
There are many things I would love to share
But wonder if you would even care
The honest truth…
We all have crosses to bare
So many burdens of past failures made aware
The honest truth…
Some things you would not want to hear
So many things that need to be made clear
The honest truth…
The pain is for real
But to many its seems unreal
The honest truth…
We all stumble and fall
We all need someone to catch our fall
The honest truth…
When we begin to realize there is no perfect here on earth
We begin to see life at its true worth
The honest truth…
Some of my worst days have become my best
There is truly hope in the unrest
The honest truth…
I would not be where I am today
Without every pain and heartache of yesterday
The honest truth…
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My new UK friend with CRPS/RSD wrote this real and honest poem based on her personal struggle she has been forced to take on, despite her illness. I’m so touched and honored that she credits my recent post, “My Brain is Lost: Brain Fog Again” as her inspiration. Check out more of her poetry and please support her on her very brand new blog xo
hello dears, here is a poem I wrote recently, influenced by a Blog post made by a friend;
13;51 / Monday 22 January 2018
Poem; Words Won’t Come
“words won’t come, I’m feeling foggy, I think my brain slipped out on me
words won’t form, I have toffee teeth, there’s not much in clear vision, that I can see.”
I hear you perfectly hon, I feel the same these days,
I’ve been trying somehow to feel a little bit better,
But nothing works, from a dozen different ways
I feel a little vulnerable, I feel a Big Bit Lost, I feel back at five years old,
I feel at odds, with the rest of people, as if I’m a freak, they must leave out, in the cold
I’m not a criminal! I’m a quiet person, an Introvert, but I fear that’s not what they see
“we are loud! we are…
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ROCK OF AGES
Father, I am sinking.
Would you throw to me a rope?
Would you please confirm the scripture
That I’m never without hope?
Would you strengthen me in spirit
As I trod this rocky road?
Would you bear for me the burden
That is such a heavy load?
Would you wipe away the tears
That keep falling from my eyes?
Would you lovingly send mercy
When you hear my anguished cries?
Would you not let pain consume me
Taking focus out of prayer?
Would you be my rock of ages
Greater than my worldly care?
-Copyright Mary Jane Gonzales
(PSALM 91:1,14 Inspiration verses)
Today we honor author, poet, and chronic pain advocate Mary Jane Gonzales by reading her poetry, as her family and friends gather to pay tribute to her at her Celebration of Life service. Her poetry was actually her prayers, as she began praying in verse after her illness struck nearly 30 years ago. Jane became a Christian later in her life, and her faith was her rock and guiding light throughout her battle with the severe neurological disease Complex Regional Pain Syndrome, which kept her confined to a bed through the final years. Though her body fought her daily, she used what energy she had to be a source of encouragement to others living in pain. If you would like to read one of her inspiring books, you can find her author page here where several of her books are available for download as ebooks.
“My Only Consolation”
Written by Mary Jane Gonzales
Music and Performance by Lequita Hoffpauir
SHAPE ME YET ANEW
Father God, I pray
That you would shape me yet anew,
As this pot is cracked and broken
And un-beautiful to you.
Lord, I feel as if you’ve started
With a fresh supply of clay
And I’m spinning on the wheel
And my life’s begun to sway.
When you’ve shaped me in your image
And you put me in the kiln,
In the furnace of affliction
To be set and processed still,
Let the outcome be for glory,
Let on-lookers stop and gasp.
“How did He make this from nothing?”
Let the people stop and ask.
Let the beauty draw attention
To the artist and His work.
Give me beauty and a purpose, Lord,
Of which I would not shirk.
As it is with real life pottery,
A pitcher or a vase,
Make me useful to the Master
In the setting where I’m placed.
-Mary Jane Gonzales
JEREMIAH 18:4 (NIV)
But the pot he was shaping from the clay was marred in his hands; so the potter formed it into another pot, shaping it as seemed best to him.
Below is the link to beloved author, poet, and long time chronic pain advocate, Jane Gonzales’s obituary.
Her family is saying goodbye and honoring her with a ‘Celebration of her Life’.
Her service is on Feb 5th, in Houston, TX.
For those of us who cannot make it to her service to say our final goodbyes, we will be sharing our special memories, and the many ways she affected our lives and inspired us. We’ll also be posting some of Jane’s wonderful heartfelt poetry and articles here as well.
I invite you share your precious memories of our sister, Mary Jane Gonzales, so we can all remember her and celebrate her incredible life together.
Mary Jane Gonzales, one of the greatest voices for CRPS/RSD and chronic pain awareness has passed away after battling Complex Regional Pain Syndrome for over 25 years.
She passed away on January 21st, 2018 from complications of chronic illness. She turned 70 this past year.
Jane authored several inspiring books (linked below), her Facebook page Poetic Hearts remains open, and her blog, http://LifethroughPoetryandProse.simplesite.com has an abundance of Jane’s articles on Chronic Pain. You can leave a comment on her blog or her Facebook Timeline for her family if you’d like.
She was a poet, an artist, mother, grandmother, and one of my closest friends.
I’m not exactly sure how to proceed, or how to honor her memory properly yet.
But, I want to invite you, if you have a personal story about Jane, a memory, artwork, a poem, etc. Please email it to me at firstname.lastname@example.org
I need your help. I’m organizing a month-long tribute to share her life, and your messages will be at the center.
Maximum 800 words, no minimum
She will be missed by so many. But she left so much behind for us all to remember her and what she stood for.
If you have followed this blog, you’ll already be familiar with Mary Jane Gonzales. Read more about her and her books below, an article I wrote about her 2 years ago as a surprise for her when her 10th book was released.
She touched so many lives, and she will be missed by all of us.
She is no longer suffering. She is finally free. She’s walking in the sunshine with her best friend and Savior, Jesus. I look forward to telling you more about her and her life in the coming days. Take heart knowing that she is where her soul has longed to be. She ran the race.
When it feels like life is breaking apart around us, we must go out of our way to pour light and wisdom back into our lives. I wanted to share the books of Mary Jane Gonzales here because self care during a separation or divorce is so crucial! This author, poet, mother, and chronic pain survivor knows a thing or two about caring for her own body and spirit.
She just released her 10th book, A Voice Unheard, which is unlike any of her previous books. Her compassion and inside knowledge for the current issues those with chronic illness live with silently, makes this book a must read for patients, family of anyone diagnosed with a chronic disease, and health care professionals.
Gonzales utilizes the patient advocacy work she has done over the years to speak out on behalf of those marginalized on account of being disabled or chronically ill…
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If you know someone going through a bad breakup, someone grieving a loss, someone who lives with mental illness, or someone going through a new or ongoing health crisis, share this image with them to save on their phone or computer.
If you’re going through a tough season and *need* to ask for help, I pray you have the courage to do so, and a compassionate soul who will answer that call.
Sometimes what we need wins over what we want. Our pride never wants to concede in that battle of wills.
There’s no shame or guilt in doing the right thing for your survival. Don’t let those ugly whispers (of guilt or shame) predict how you should live ♡
If you are struggling today, please call your State Behavioral Health Crisis Line. They are professionals and are trained to listen.
What are your basics?
If you made a list, what would be on it?
What helps you feel like a human being again?
Maybe you like to brush your hair, or maybe drinking coffee in the morning does the trick. Some people must first put on lipstick, and for others, it’s saying hello to their furry friends that begins to restore their equalibrium.
-Take your Pills
-Brush your Teeth
-Move your body/Stretch
-Read something inspiring
-Call/contact a loved one
-Pray, Rest, Meditate
-Do something fun/hobby
You’ll notice, I didn’t add “Eat something healthy” because sometimes the best we can do is eat anything at all. After you have fed your stomach, hydrated thoroughly, and you’ve taken your meds and/or vitamins, make sure to feed your soul.
Feeding my soul is just as nourishing as feeding my body. If all I set my eyes and heart on is social media and television for a week, I can’t be surprised if I’m feeling nervous and low by the end of the week. I love the term “Inspirationalizing” as an active verb. We have to go out of our way to find uplifting articles for hope, books and quotes by our role models for wisdom, seeking out words of wisdom from your faith for guidance.
What ways do you like to feed your soul?
Since my divorce, I have overhauled my self care. In a relationship, you each have a schedule and you’re attuned to the other person’s needs. They know you, and are able to remind you of your needs- you lean on one another, and develop patterns. These habits and patterns had become engrained over 15 years. But patterns can be changed- and self care is a pattern that we all have to develop.
As I continue adjusting to my single life, in time, I’ve learned to check in with myself with as much effort as I would have my spouse. Having a schedule of sorts helps, and prioritising is especially important for me. In the beginning, the transition was especially difficult. It took time. If you are facing a transition, give yourself time… Things will find their place again. Please don’t neglect your well being in the mean time.
Whichever self care step you’re struggling with, find a way to make it easier on you to accomplish. For instance, if washing your hair has become your arch nemesis, then get creative. Maybe it’s due to chronic pain in your arm, or a slow healing back surgery. In that case, keep a bottle of no-rinse shampoo handy. Keep it with you at all times so you can do your hair washing at the times you feel able.
Similarly, if it’s tooth brushing that you can’t seem to fit in twice each day, know that you’re not alone and don’t be ashamed. Get creative.
There are plenty of solutions to make your personal care work for your special needs and your unique schedule.
What are some goals you have on your self care list?
What self care would you like to set as a priority for yourself this year?