Tag Archives: fundraising

2017 Bi-Annual Report

For the past few years we have given an annual update in December, but so much has happened in the last few months that we want to share with you today.

Many of you have been on this journey with us since the very beginning when we started this blog in January 2014 after learning that Katherine had a rare disease that affected her cerebellum. In those early days, this blog was an outlet for our immense grief after being told by two doctors that our daughter had a quickly fatal disease.

It is soul-crushing.

Slowly, we made our way to research, awareness, advocacy, and thankfully, in February 2015, an accurate diagnosis of Mitochondrial Complex 1 Deficiency (NUBPL gene).

The only word we’ve found that best describes the last four years is journey. On this journey, we have learned that adaptability to change is key to moving forward. I am proud of what we’ve learned and accomplished amidst very difficult circumstances. I am also thankful for each of you who’ve followed along and continue to cheer for our daughter while lifting us up on our darkest days. You are an integral part of our story.

From the beginning, we knew that we needed to be Katherine’s voice in order to give her hope for the future. Isn’t that what we all want for our children? Sometimes that means something more or different depending on the circumstances. In our case, the task at hand – our greatest hope of all – is to give our child a treatment and cure for a disease that threatens to take her life sooner than any parent should have to imagine.

If someone is threatening to kill your child, most parents wouldn’t ignore the threat. I believe that most would try to prevent it – to go above and beyond to protect the life and well-being of their child. Mitochondrial Disease is threatening our daughter’s life and we have to stop it. We are on a mission to find a treatment and cure.

2017 Bi-Annual Report

1. Founded the NUBPL Foundation, Inc. to raise awareness and funding for Mitochondrial Complex 1 Deficiency (NUBPL gene).
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2) In February we had our first fundraiser, Rare Bourbon for Rare Disease. The event grossed $32,000. There is a nice write-up about the event here: The Spirit of Giving, Paducah Life Magazine
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3) Traveled to California to meet another NUBPL family (The Spooner Family) at UC-Irvine – first time two NUBPL families have ever met. We met with Dr. Virginia Kimonos and other mitochondrial disease researchers at UC-Irvine and toured their lab.
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4) I continue to write advocacy articles for The Mighty Publication and we hope to participate in a legislative advocacy webinar in the coming months to help others advocate for Mitochondrial Disease legislation. My latest article for The Mighty is here.

5) We are growing our NUBPL community and are now in contact with another family in Canada and will meet another one in two weeks – the first non-sibling match to our daughter in the world. The more families we can connect with, the more we can learn from one another and fundraise for treatments together.
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6) In April we participated in 2017 Kentucky Gives Day and received the second highest donations in the state, netting $10,565 (and receiving $1,000 for second place).
KY-gives-day-logo7) Katherine entered the extension phase of the EPI-743 trial and continues on the drug today. We made several trips to the NIH and presented our journey to attending NIH physicians.
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8) In June we with researchers at the Mitochondrial-Genetic Disease Clinic at the Children’s Hospital of Philadelphia (CHOP) and toured their laboratory.
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At this point on our journey, we are tackling the daunting challenge of major fundraising. Ideally, we would like to fund all NUBPL research, but at this point we feel the best approach is to research the natural history of NUBPL and to do so as quickly as possible so that a therapy can be determined to help Katherine.

In addition to our NUBPL Foundation GiveGab fundraising platform, we have established the Hope for Katherine Belle Mitochondrial Disease Research Fund at the Children’s Hospital of Philadelphia (CHOP) to immediately begin researching the natural history of the disease through various animal models.

Every donation matters and is greatly appreciated. Every donation is tax-deductible. Every donation advances critical mitochondrial disease research that will help not just Katherine but countless others. The approach being used will test many strategies that are hoped to be used for other mitochondrial diseases. The natural history studies are necessary to set a baseline against which they can measure the efficacy of the therapies, which show promise across mitochondrial diseases.

We whole-heartedly believe in this research and will keep moving forward to give Katherine and others affected by this disease the best chance at life. We hope you will continue to walk with us as we venture into this critical aspect of our journey. We’ve come so far in four short years;  I truly believe that, together, we can fund a treatment.

Please consider making a tax-deductible donation today to the Hope for Katherine Belle Mitochondrial Disease Research Fund.

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2016 Rare Disease Day $1 Challenge

We all live a life that can never be fully conveyed through social media – a world we see daily that cannot be shared or adequately described through five second sound bites or a quick snapshot. These moments are felt and lived, not shown and told.

I give you countless examples and observations, but I know I always fall short in my depiction. At the end of the day, all I have is a promise to myself and my daughter. It’s easy to tell myself I’m doing enough, and I am in the normal world, but nothing about our journey is “normal.”

We must push forward and harness the scientific possibilities for treatment beyond clinical trial drugs and therapy. We are growing Katherine’s stem cells and raising money to fund NUBPL research. Advances are being made daily and we need to fuel it. This is what I mean by not giving up.

I fight a daily battle on the home front, which is mighty enough, but there’s a larger war beyond our doorstep that, if won, can ease the struggles of all of our personal fights.

This is what ‪#‎Hope4KB‬ means to me.

February 29th is Rare Disease Day 2016 – just 55 days away. Each year we try to do something special to raise awareness. Last year we sold #Hope4KB t-shirts and asked that you wear them on Rare Disease Day. We raised $2700 for rare disease.

Our $1 challenge for 2016 is simple:

  1. SHARE this post; and
  2. Challenge yourself to donate just $1 (or more) to one of the following: Hope for Katherine Belle or The Spooner Girl Foundation. Our daughter’s disease is called NUBPL and has been linked to Parkinson’s Disease. (Click here for the full bio of lead researcher, Dr. Virginia Kimonos.) All donations will directly go to NUBPL research, treatment, and hopefully, a CURE! It is amazing how much can add up if everyone gives just a little.

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Hope for Katherine Belle Contributions

We sincerely thank each of you for your generous donations. Each contribution was so helpful in helping us get an accurate diagnosis for Katherine. Future donations will help to further research for NUBPL.

$5 – $20
Anonymous
Lisa Auge
Donald Kirby
John Shouse
Daniel Egbers
Tania Zivkovic
Anonymous
Lisa Gabbard
Anonymous
Anonymous
Jackie Slone
Jodi Miller
Lindsey Davison
Miriam
Anonymous
Anonymous
Deborah Drury
Janet Lensing
Marla Blair
David Helmers
Pete Palmer
David Longenecker

$25 – $50
Anonymous
Anonymous
Anonymous
Anonymous
David Smith
Michelle Eviston
Robert Johnson
Just Aces2x
Ann Leslie Jones
Ingrid & Joe Jordan
Sara Kinslow
Anonymous
Anonymous
Anonymous
Kelly Bradley
Tonya Nuckolls Smith
Danielle G.
Jeffrey Burdette
Dena Wilson
Katie Irwin
Patrick Conley
Caroline Winston
Marisa Aull
Susan Nalley
Amanda Crawford
Jenny A.
Anonymous
Anonymous
Claudine Aldon
Anonymous
Sandy Auge
Joan Gregory
Piper Plummer Mehigan
Kathryn Belle Allen
Polly Helm
Rae Ann and Aragon Caldwell
Cheryl Gayhart
Anonymous
Anastasia Turner
Jared Hughes
Anonymous
Dave Daniel
Mindy Timberlake Sunderland
Anonymous
Lisa Simonds
Tammy Downard
Natalie Ballash
Anonymous
Ken and Jane Kerns
Melissa Davis
Laura Reynolds
Amelia & Garret Lewis
Terry Lennie
Anonymous
Beth Kleykamp
Anonymous
Myra Hughes
Anonymous
Morgan & Bradley Turner
Brandi Sharkey
Mary Beth Richard
Ron Gray
Bertrand Might
Matt Hudson
Anna Dominick
Laura Timberlake

$60 – $100
Anonymous
Matthew Ryan
Brian Humphrey
Anonymous
Courtney McGair
Allie Townsend
Lori Daniel
Julia Burnett Armstrong
Isabel Ladd
Anonymous
Anonymous
Ruth Castle
Laura Hagan
John Stapleton
Doug Richards
Stacey & Charles Magee
Julie Bell
Joanne Hall
Christina O’Brien
Chris Chase
Laura Zucker
David Wheeler
Pam Stith
Ann Aldridge
Anonymous
Stuart Family
Scott Weigel
Sara Charles
Anonymous
Anonymous
Anonymous
Julie & Jim Smith
Anonymous
Susan Sears/Bill Rambicure
Owen McMasters
Terri Sue
Elizabeth Taylor
David Oakes
Anonymous
Ashley Soriano
Dan Cauley
Sheila Hiestand
Vanessa Cantley
Hal Helmers
Jenny Scott
Mary Page Platerink
Stephanie Morrison
Sheila Bottoms Gerkin
Paula Holbrook
Laura Vincent

$150 – $250
Mark Hillard
Anonymous
Patrick Gault
LaDonna Koebel
Mark King
Anonymous
Ninfa Floyd
Chris Woods
Anonymous
Marian Hayden
Shannon Ragland
Nyoka Hawkins & Gurney Norman

$500 – $1000
Anonymous
Hannah & Mike Duffy
Alvah McCoy
Anonymous
Cole Preston
Kathy Lancaster
Jill & Craig Schroeder
Anonymous

$3,000
Michelle Lerach

Also, a very special thanks to Pem and Kevin Ausbrook, Patricia Madden, Jerry and Mary Ann Faughn, Kathy Cowden, Alvah McCoy, Stephanie Preston and Mike Meuser, Print My Threads (Ashland, KY), and everyone who purchased a #Hope4KB T-shirt.

To make a donation for NUBPL research, please click here.