NoahBRAVE Foundation Fundraiser
Donation protected
13 year old Noah Evans was unexpectedly diagnosed with a brain tumor last September after he started experiencing headaches and vomiting after playing soccer. He had brain surgery to remove a majority of the tumor and then endured 30 radiation treatments and 6 weeks of chemotherapy at Vanderbilt Children's Hospital. Due to the rarity and aggressiveness of Noah's tumor type there is currently no known medical cure for his kind of brain cancer. So continual prayer for earthly healing needed! The University of Michigan Chad Carr Pediatric Brain Tumor Center has the leading clinical trial for Noah's tumor type; he was enrolled in a clinical trial there from December 2019 through August 2020. This September, the one year mark of his diagnosis, Noah was unexpectedly hospitalized due to symptoms of his brain tumor. After being released from the hospital he underwent 10 more rounds of radiation treatment and is now enrolled in a clinical trial at Duke University. Noah is a kind, gentle, humble, thoughtful, joyful, and encouraging young man who loves to spend time with his family and loves the Lord his God with all his heart, mind, soul, and strength. He is such a brave fighter and continues to take every step of this journey with strength and courage. The way Noah is walking bravely through this journey is incredibly admirable.
His family has also been walking bravely and courageously through this journey alongside Noah and here, his mom, Lori Evans shares her heart behind the NoahBRAVE Foundation and reason for raising funds as her birthday gift this year:
Next week, on October 29th, I turn 40…Not quite the the way I had planned to celebrate the Big 4-0. In fact, for years leading up to this milestone birthday, I had plans to be hiking, camping, and gazing upon God’s beautiful creation with my family at Yosemite, my favorite National Park (or at least my favorite so far!). God obviously had other plans.
Last year, when I turned 39, some sweet friends surprised me with a birthday party at my house when we returned home from playing some family Pickleball. I remember thinking to myself then that this year, when I turned 40, that this journey would be well over. I had been dealing with the reality of Noah’s prognosis for 1 month and thought for sure the earthly miracle would have already happened and life would be back to “normal”. My faith was strong, my confidence assured, and my hope steadfast in God’s earthly healing for Noah, regardless of what doctors said about his earthly diagnosis and prognosis. One year later I am now celebrating my 40th birthday and we are still in the battle.
In some ways we are even deeper in the trenches than we were one year ago. Last year there was a clear plan; brain surgery, radiation, traditional chemo, and then the most promising trial for Noah’s tumor type and location, ONC201, at the University of Michigan. After tumor spread and growth shown on April, June, and August scans, we’ve been on the search for what to do next. We stare across the room (or screen) at faces of doctors at the greatest institutions across America and hear one after another say they don’t have a cure for this disease but will do their best to prolong Noah’s life for as long as possible. We are very hopeful for Noah’s vaccine trial at Duke starting early next month and believe God could use this to reveal an earthly miracle healing for Noah.
One of my dreams for my “40th Birthday Bucket List” was to start a foundation, The NoahBRAVE Foundation. It’s a dream that God gave me when we started this adventure a year ago and I realized how much help we were going to need to make it through a terminal brain cancer diagnosis.
Along the journey, as I felt God speak to me about the foundation, I wrote notes and I have a working Mission Statement:
“The NoahBRAVE Foundation exists to bring Hope {Spiritual}, Support {Financial}, Connection {connect DIPG/DMG families together}, and Encouragement {Tangible} to families as they walk their journey from diagnosis to healing from Pediatric Brain Tumors, specifically DIPG/Diffuse Midline Gliomas”.
NoahBRAVE Foundation Goals: to take care of families who have been given the diagnosis of “terminal brain cancer” and give back to research for a cure of DIPG/DMG.
We exist to provide support in ALL areas of the journey so families can solely focus on being together and supporting their child(ren).
We will “adopt” families and partner with them at EVERY step as a personal care guide from diagnosis to healing and beyond.
Focus Verse for NoahBRAVE Foundation:
Joshua 1:9
“Have I not commanded you? “Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go.””
We will host events to raise money for the foundation. This money will be used to help families who are walking through this diagnosis. Help will be dependent on need of each family, but ideas include taking care of: salaries, bills (utilities, car payments, phone bills), mortgages, groceries, meals, house cleaning, yard work, travel expenses to out of town treatments, medical copays/bills, alternative therapies, counseling for families, gift cards and family fun activities/trips/vacations.
We will also be a giving foundation for DIPG/DMG research. A percentage of each NoahBRAVE Foundation fundraiser will go directly to funding research for DIPG/DMG. Since medically speaking there is not yet an earthly cure for this disease and the statistics are grim, research is an integral part of the foundation. Do a quick Google search of these diagnoses and you’ll read every parent’s worst nightmare.
Research from Dr. Koschmann at the University of Michigan’s Chad Carr Pediatric Brain Tumor Center, where Noah was a patient from December 2019 - August 2020, presents these statistics for DIPG/DMG Prognosis:
• Not Curative
• Median overall survival for MRI-confirmed DIPG: 11 Months
• Median overall survival for H3K27M thalamic: 14 Months
• Radiation Therapy is the only established therapy that increases median survival
I had some very wise counsel from Tammi Carr, founder of The Chad Tough Foundation, about starting the NoahBRAVE Foundation; she said to take care of and give all my attention to Noah, and the foundation will come to fruition when God’s timing is right. I have heeded that advice and thus have not yet been able to officially get the 501 c3 needed to start the Foundation, but I have already had an extremely generous donation after sharing my heart with a dear friend. I was able to use that money to give back to Chad Tough for research and also generously bless a family financially who is also currently walking this journey with their 6 year old daughter. I remember the excitement that I had when I was able to send the mom that check and other gifts on behalf of NoahBRAVE. In a world where you feel like you cannot do anything to tangibly help other people whose child is needing a miracle just like you are, it filled my tank to overflowing to be able to bring hope, support, connection, and encouragement to this family.
Many, many, MANY people have said these words to us since Noah’s diagnosis last September 18th; “If you need anything, please let us know.” I have always responded with “prayer”. Prayer has always been the most important to us, especially since we are requesting prayer to God Almighty, Jehovah Rapha, our Healer and Great Physician; the only ONE able to provide the miracle for Noah.
But next week, as I turn 40, I am asking you to do something. I am answering the “let me know know if you need anything” request. Make a donation to the {unofficial} NoahBRAVE Foundation. 100% of everything raised will be given away; 80% will go directly to helping other families fighting DIPG/DMG brain tumors and 20% will go back to DIPG/DMG research for a cure of this currently medically incurable disease.
Noah’s trial at Duke University is being funded in part by The Pediatric Brain Tumor Foundation. Interestingly enough, in January of 2020, we were invited to share Noah’s story at a PBTF “Vs Cancer” event at a Collegiate Baseball Coaches conference in Nashville. Now, almost a year later, we are benefitting from the funds they raise through Noah’s trial at Duke, so we want to give back to the foundation that is funding research for a cure. Therefore, 20% of what is raised will go directly to the Pediatric Brain Tumor Foundation.
Since posting about Noah’s diagnosis and asking for connections, I have met families walking this journey who could use hope, support, connection, and encouragement to continue fighting the fight. I have also met many families who’s young daughters and sons have received Heavenly healings. This is why the NoahBRAVE Foundation exists, even in its unofficial, infancy stage; to help support families in the battle AND help fund research for a cure.
3 families in particular that God has seen fit to intertwine our story together with in recent months is Jace Ward, Lucy Sieck, and Maddie Moore. I want to put faces and stories to the NoahBRAVE Foundation so you can see where your money will go.
Jace Ward is 21 years old and fighting a DIPG. His mom, Lisa, and I met through Tammi Carr. He is currently enrolled in a clinical trial at Stanford University. You can read more about Jace’s fight here: https://www.facebook.com/jwtough2gether/
Lucy Sieck is 6 years old and has been fighting DIPG since May of this year. Her mom, Raegan and I also met through Tammi Carr and she was also enrolled in the ONC201 clinical trial at Michigan. You can read more about Lucy’s fight here: https://www.facebook.com/LucyLoveDIPG/
Maddie Moore was healed of her DMG H3K27M May 22nd of this year after battling courageously since August 21, 2018. Her mom, Melissa, and I connected on Facebook after I posted about wanting to connect with other families who had Noah’s exact diagnosis. Maddie was on the ONC201 trial at the University of Michigan, too. You can read more about Maddie’s fight here: https://www.facebook.com/MadStrong-1041767662662536/
A few weeks ago Mika and I were on a walk around our neighborhood and we were dreaming together about what God could do through the NoahBRAVE Foundation. I said I hope that families who are walking this journey will feel loved, seen, known, and cared for through the help given by the foundation. As I said those words I stopped walking as a revelation came to my mind; that is who Noah is. When you spend time with him, you feel loved, seen, known, and cared for.
His character is the heartbeat of the foundation.
The day the doctor looks across the room from you and gives you the prognosis of “incurable, terminal brain cancer” with 6 to 12 months to live for your 12-year-old son is the day you realize what is truly important in life. You do anything you can to support your child going through the treatment and their siblings who are dealing with the emotions surrounding the diagnosis. Both Tom and I tried going back to work; in fact he was supposed to see a patient the day we got the pathology report back. Not sure how anyone gets news like that and then shows up to work. We also tried to send our kids to school. Elijah had anxiety and after Covid, we decided to homeschool the boys. Nothing is “normal” anymore; between appointments, treatments, scans, travel, trials, research, dealing with insurance and bills, unexpected hospital stays, emotions, and life happenings, “normal” days are few and far between and look much different than they ever did before diagnosis. You need help everyday, even if you can’t verbalize what it is you need.
I am strong in my faith, but I still have had sleepless nights and anxiety-filled days along this journey. There have been moments that I physically can’t do anything because the burden is so heavy and weighing me down. Tears fall and nothing can stop them. I honestly don’t know how people do it without the hope of Jesus and a strong community supporting them. We’ve had every need met by God and the greatest community around us and it’s still been a brutal battle. I pray this Foundation will be for others what we have needed to survive since September 18th of last year.
This fundraiser will run from October 22 - October 31, 2020.
Please pray, donate, and share!! Join us in supporting families walking this journey and research to find a cure for DIPG/DMG brain tumors.
If you have any questions, please send me a message on Facebook Messenger. I will post how much is raised, how much is given to research through the Pediatric Brain Tumor Foundation, and how much is given to other families in the fight!
You can continue to follow Noah's story on his Caring Bridge Site: https://www.caringbridge.org/visit/noahevans/journal and Facebook: https://www.facebook.com/lori.b.evans.14
His family has also been walking bravely and courageously through this journey alongside Noah and here, his mom, Lori Evans shares her heart behind the NoahBRAVE Foundation and reason for raising funds as her birthday gift this year:
Next week, on October 29th, I turn 40…Not quite the the way I had planned to celebrate the Big 4-0. In fact, for years leading up to this milestone birthday, I had plans to be hiking, camping, and gazing upon God’s beautiful creation with my family at Yosemite, my favorite National Park (or at least my favorite so far!). God obviously had other plans.
Last year, when I turned 39, some sweet friends surprised me with a birthday party at my house when we returned home from playing some family Pickleball. I remember thinking to myself then that this year, when I turned 40, that this journey would be well over. I had been dealing with the reality of Noah’s prognosis for 1 month and thought for sure the earthly miracle would have already happened and life would be back to “normal”. My faith was strong, my confidence assured, and my hope steadfast in God’s earthly healing for Noah, regardless of what doctors said about his earthly diagnosis and prognosis. One year later I am now celebrating my 40th birthday and we are still in the battle.
In some ways we are even deeper in the trenches than we were one year ago. Last year there was a clear plan; brain surgery, radiation, traditional chemo, and then the most promising trial for Noah’s tumor type and location, ONC201, at the University of Michigan. After tumor spread and growth shown on April, June, and August scans, we’ve been on the search for what to do next. We stare across the room (or screen) at faces of doctors at the greatest institutions across America and hear one after another say they don’t have a cure for this disease but will do their best to prolong Noah’s life for as long as possible. We are very hopeful for Noah’s vaccine trial at Duke starting early next month and believe God could use this to reveal an earthly miracle healing for Noah.
One of my dreams for my “40th Birthday Bucket List” was to start a foundation, The NoahBRAVE Foundation. It’s a dream that God gave me when we started this adventure a year ago and I realized how much help we were going to need to make it through a terminal brain cancer diagnosis.
Along the journey, as I felt God speak to me about the foundation, I wrote notes and I have a working Mission Statement:
“The NoahBRAVE Foundation exists to bring Hope {Spiritual}, Support {Financial}, Connection {connect DIPG/DMG families together}, and Encouragement {Tangible} to families as they walk their journey from diagnosis to healing from Pediatric Brain Tumors, specifically DIPG/Diffuse Midline Gliomas”.
NoahBRAVE Foundation Goals: to take care of families who have been given the diagnosis of “terminal brain cancer” and give back to research for a cure of DIPG/DMG.
We exist to provide support in ALL areas of the journey so families can solely focus on being together and supporting their child(ren).
We will “adopt” families and partner with them at EVERY step as a personal care guide from diagnosis to healing and beyond.
Focus Verse for NoahBRAVE Foundation:
Joshua 1:9
“Have I not commanded you? “Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go.””
We will host events to raise money for the foundation. This money will be used to help families who are walking through this diagnosis. Help will be dependent on need of each family, but ideas include taking care of: salaries, bills (utilities, car payments, phone bills), mortgages, groceries, meals, house cleaning, yard work, travel expenses to out of town treatments, medical copays/bills, alternative therapies, counseling for families, gift cards and family fun activities/trips/vacations.
We will also be a giving foundation for DIPG/DMG research. A percentage of each NoahBRAVE Foundation fundraiser will go directly to funding research for DIPG/DMG. Since medically speaking there is not yet an earthly cure for this disease and the statistics are grim, research is an integral part of the foundation. Do a quick Google search of these diagnoses and you’ll read every parent’s worst nightmare.
Research from Dr. Koschmann at the University of Michigan’s Chad Carr Pediatric Brain Tumor Center, where Noah was a patient from December 2019 - August 2020, presents these statistics for DIPG/DMG Prognosis:
• Not Curative
• Median overall survival for MRI-confirmed DIPG: 11 Months
• Median overall survival for H3K27M thalamic: 14 Months
• Radiation Therapy is the only established therapy that increases median survival
I had some very wise counsel from Tammi Carr, founder of The Chad Tough Foundation, about starting the NoahBRAVE Foundation; she said to take care of and give all my attention to Noah, and the foundation will come to fruition when God’s timing is right. I have heeded that advice and thus have not yet been able to officially get the 501 c3 needed to start the Foundation, but I have already had an extremely generous donation after sharing my heart with a dear friend. I was able to use that money to give back to Chad Tough for research and also generously bless a family financially who is also currently walking this journey with their 6 year old daughter. I remember the excitement that I had when I was able to send the mom that check and other gifts on behalf of NoahBRAVE. In a world where you feel like you cannot do anything to tangibly help other people whose child is needing a miracle just like you are, it filled my tank to overflowing to be able to bring hope, support, connection, and encouragement to this family.
Many, many, MANY people have said these words to us since Noah’s diagnosis last September 18th; “If you need anything, please let us know.” I have always responded with “prayer”. Prayer has always been the most important to us, especially since we are requesting prayer to God Almighty, Jehovah Rapha, our Healer and Great Physician; the only ONE able to provide the miracle for Noah.
But next week, as I turn 40, I am asking you to do something. I am answering the “let me know know if you need anything” request. Make a donation to the {unofficial} NoahBRAVE Foundation. 100% of everything raised will be given away; 80% will go directly to helping other families fighting DIPG/DMG brain tumors and 20% will go back to DIPG/DMG research for a cure of this currently medically incurable disease.
Noah’s trial at Duke University is being funded in part by The Pediatric Brain Tumor Foundation. Interestingly enough, in January of 2020, we were invited to share Noah’s story at a PBTF “Vs Cancer” event at a Collegiate Baseball Coaches conference in Nashville. Now, almost a year later, we are benefitting from the funds they raise through Noah’s trial at Duke, so we want to give back to the foundation that is funding research for a cure. Therefore, 20% of what is raised will go directly to the Pediatric Brain Tumor Foundation.
Since posting about Noah’s diagnosis and asking for connections, I have met families walking this journey who could use hope, support, connection, and encouragement to continue fighting the fight. I have also met many families who’s young daughters and sons have received Heavenly healings. This is why the NoahBRAVE Foundation exists, even in its unofficial, infancy stage; to help support families in the battle AND help fund research for a cure.
3 families in particular that God has seen fit to intertwine our story together with in recent months is Jace Ward, Lucy Sieck, and Maddie Moore. I want to put faces and stories to the NoahBRAVE Foundation so you can see where your money will go.
Jace Ward is 21 years old and fighting a DIPG. His mom, Lisa, and I met through Tammi Carr. He is currently enrolled in a clinical trial at Stanford University. You can read more about Jace’s fight here: https://www.facebook.com/jwtough2gether/
Lucy Sieck is 6 years old and has been fighting DIPG since May of this year. Her mom, Raegan and I also met through Tammi Carr and she was also enrolled in the ONC201 clinical trial at Michigan. You can read more about Lucy’s fight here: https://www.facebook.com/LucyLoveDIPG/
Maddie Moore was healed of her DMG H3K27M May 22nd of this year after battling courageously since August 21, 2018. Her mom, Melissa, and I connected on Facebook after I posted about wanting to connect with other families who had Noah’s exact diagnosis. Maddie was on the ONC201 trial at the University of Michigan, too. You can read more about Maddie’s fight here: https://www.facebook.com/MadStrong-1041767662662536/
A few weeks ago Mika and I were on a walk around our neighborhood and we were dreaming together about what God could do through the NoahBRAVE Foundation. I said I hope that families who are walking this journey will feel loved, seen, known, and cared for through the help given by the foundation. As I said those words I stopped walking as a revelation came to my mind; that is who Noah is. When you spend time with him, you feel loved, seen, known, and cared for.
His character is the heartbeat of the foundation.
The day the doctor looks across the room from you and gives you the prognosis of “incurable, terminal brain cancer” with 6 to 12 months to live for your 12-year-old son is the day you realize what is truly important in life. You do anything you can to support your child going through the treatment and their siblings who are dealing with the emotions surrounding the diagnosis. Both Tom and I tried going back to work; in fact he was supposed to see a patient the day we got the pathology report back. Not sure how anyone gets news like that and then shows up to work. We also tried to send our kids to school. Elijah had anxiety and after Covid, we decided to homeschool the boys. Nothing is “normal” anymore; between appointments, treatments, scans, travel, trials, research, dealing with insurance and bills, unexpected hospital stays, emotions, and life happenings, “normal” days are few and far between and look much different than they ever did before diagnosis. You need help everyday, even if you can’t verbalize what it is you need.
I am strong in my faith, but I still have had sleepless nights and anxiety-filled days along this journey. There have been moments that I physically can’t do anything because the burden is so heavy and weighing me down. Tears fall and nothing can stop them. I honestly don’t know how people do it without the hope of Jesus and a strong community supporting them. We’ve had every need met by God and the greatest community around us and it’s still been a brutal battle. I pray this Foundation will be for others what we have needed to survive since September 18th of last year.
This fundraiser will run from October 22 - October 31, 2020.
Please pray, donate, and share!! Join us in supporting families walking this journey and research to find a cure for DIPG/DMG brain tumors.
If you have any questions, please send me a message on Facebook Messenger. I will post how much is raised, how much is given to research through the Pediatric Brain Tumor Foundation, and how much is given to other families in the fight!
You can continue to follow Noah's story on his Caring Bridge Site: https://www.caringbridge.org/visit/noahevans/journal and Facebook: https://www.facebook.com/lori.b.evans.14
Organizer and beneficiary
Mikaela Morris
Organizer
Franklin, TN
Lori Evans
Beneficiary