Juno Therapeutics in the News (T-Cell Therapy)

Juno Therapeutics has been in the news lately; they "went public" on the NASDAQ exchange recently (you can look up the stock with the symbol JUNO). Juno was also featured in Seattle Business magazine last month, in a fascinating article about the business climate for biotechnology here in Seattle. The article explores how Juno fits into that picture, and is well worth the time it takes to read; you can access it easily by clicking the link HERE.

The day we have prayed for is drawing closer through this research - the day when we stop poisoning cancer patients with chemotherapy and radiation, and strengthen their bodies using their own immune system's T-cells. Katie would be thrilled - somehow, I believe that she IS thrilled.

2014 Financial Report

We received the 2014 Annual Financial Report for the Katie Gerstenberger Endowment for Cancer Research. It contains GOOD news.

• Market Value on 3/31/2013: $192,743
• Contributions between 4/1/13 and 3/31/14: $27,820
• Market Value as of 3/31/14: $238,316
• Distributions to Program (to the Jensen Lab at the Ben Towne Center for Childhood Cancer Research): $8,496

That means that your generous donations and support have generated eight thousand four hundred and ninety-six dollars THIS YEAR for cancer research!

This research has already saved the lives of two cancer patients who had no other treatment options. The research will continue and expand to other types of cancers because of the continuing distributions generated by the principal of this endowment (combined with other sources). Your gifts are giving hope, care and cure to patients and their families - and saving lives.

These breakthroughs in curing cancer come just seven years after Katie's passing, and they are a beautiful legacy for her.

 Thank you for helping to create that legacy!

Another Patient in Remission!

Seattle Children's Hospital's Ben Towne Center for Childhood Cancer Research has announced that the second patient in the (PLAT)-01 clinical trial of therapy for relapsed leukemia at the is in remission! This is the work which the Katie Gerstenberger Endowment (and the Ben Towne Foundation) supports. Both Dr. Gardner and Dr. Park treated Katie when she was in the hospital, and she would be thrilled with their success, and the good work which her endowment is supporting and moving forward.

You can read all about it here:
From hopeless to cancer free

FABULOUS NEWS!

We have FABULOUS news at the Katie Gerstenberger Endowment for Cancer Research. Because of your generosity - you, our family and friends - the value of the endowment is now at an all-time high of $224,168!
This is beyond our wildest dreams of what would be raised in Katie's memory, and she would be thrilled. She would also be thrilled with the advancements in cancer research, and the hope that this means for patients like her. Here is a news flash from the Ben Towne Center for Childhood Cancer Research (which Katie's endowment supports):

  "NEWSFLASH FROM THE BEN TOWNE CENTER:

"The second clinical trial application using reprogrammed T cells was submitted to the FDA today! This trial (PLAT-02) will be for relapsed pediatric acute lymphoblastic leukemia (post-transplant).

"Our thanks to the entire team at the Ben Towne Center for your incredible efforts!"

The principal of Katie's endowment remains in trust at Seattle Children's Hospital; the income from Katie's endowment is donated to the Ben Towne Center for Childhood Cancer Research (BTCCCR) each year (usually 2x a year).

If you would like to take a tour of the BTCCCR, let me know and I will help you arrange it.

More Good News

1100 people gathered for the Ben Towne Foundation's BENefit 2013 (Image: Bryce Covey Photography)

Around here, autumn is the time when many charities host fundraisers. Gregg and I are always pleased to attend the Ben Towne Foundation's annual BENefit. We've had the privilege of being an active part of this event from its inception, and watching it grow each year lifts my heart like no other "gala" can.

Though the thing that drew us together with the Townes is the worst thing that has ever happened to us, our friendship goes far beyond that loss. It includes our sense of humor, commitment to family, a lot of coincidences, shared tastes and sensibilities, fierceness, passion and joie de vivre. It is pure pleasure to be counted among their friends and supporters, and to do all that we can to share their message and raise awareness of it.

Jeff & Carin Towne with Dr. Michael Jensen (Image: Bryce Covey Photography)

Though there are always some moments during the program that make me cry, most of my emotions at the BENefit are joyful, because the Ben Towne Foundation is getting the job done - making my dreams of a cure for pediatric cancer come true, in this time and place. Through their efforts, the pace is accelerating here in Seattle under the leadership of Dr. Mike Jensen and Dr. Rebecca Gardner (two special favorites of mine), among others. The Katie Gerstenberger Endowment for cancer research supports their laboratory.

Reba & Mary-Jane with me

Joining us at our table were my parents, brother Jim and sister-in-law Caroline, and our friends Reba, Bill, Mary-Jane and Brian. Let me give you a few statistics about our table: 60% of us had our only daughter die from pediatric cancer. Every single person at our table (100%) had suffered the loss of someone close to them as a result of pediatric cancer. For 20% of our table, it was their ONLY child (100% of the children in that family). All of us want to see this disease wiped out, with as few side effects, as quickly as possible. And we were in the right place to help the researchers accomplish that.

The news is good, my friends: the first patient in the clinical trial of T-Cell therapy continues to enjoy remission, gained after only 9 days of treatment, with side effects of flu-like symptoms during that time. Her mother was a guest at the BENefit, and spoke to the audience about what our support for this therapy means to her. The next patient is ready to enroll, and it looks as if the clinical trial will soon be expanded to include a much broader range of ages - open for more patients to be treated and cured in this new, non-toxic way!

Did you know that it can cost 10 times more to treat a child with traditional chemotherapy than with T-Cell therapy - and surgery costs even more? The bill for Katie's care was in the neighborhood of a million dollars, for which we were (thank God) covered by medical insurance - but there are many whose finances are completely wiped out by such treatment, and without the promise of a cure!

Think of it this way: you could spend $350,000 for a patient to endure chemo, which can cause secondary cancers, organ damage, susceptibility to infections and reproductive problems - or $30,000 for a patient to have T-Cell therapy, with no long-term damage whatsoever, and continuing immune-system support for remission. Which would you choose for your child - or for yourself? What would you like to see become the "norm?"

On this day - the very one on which Katie was admitted into the hospital in 2006 - people such as Katie, Carin and Jeff Towne, Dr. Jensen and Dr. Gardner inspire me. Who (or what) inspires you to give?

Thank You for Listening Generously

“When you listen generously to people they can hear the truth in themselves, often for the first time.”

Rachel Naomi Remen

I rarely write postings for all of my blogs at the same time, but today, I am doing just that. If you visit any of my blogs (www.karengberger.blogspot.com , www.katiescomfortersguild.blogspot.com , www.katiegerstenbergerendowment.blogspot.com  and www.abundantlivingaftercatastrophe.wordpress.com ) this is what you will find.

It’s been a deeply moving season here. The end of summer brings with it memories of Katie’s passing (August 16^th), my parents’ anniversary (this year they marked 60 years of marriage on August 17^th), the start of the school year (David is a junior in college, studying in Italy for a semester; Katie should be a senior in high school, looking at college choices and enjoying her last year at home with friends – but she is not). It also marks the anniversary of the start of her illness, her diagnosis, and the 10 months which were a kind of living hell, leading to her passing. The 10^th of October, the day we entered the hospital “for tests” and didn’t come out for months; October 13^th, the day we found out that it was cancer (though not what type) and Katie’s first round of chemotherapy began.

Gregg let me know during this time that he is not comfortable hearing the news, in detail, of all of my involvement in the world of cancer. He can take only so much of it. My work does not give him solace the way it does me; it simply reminds him of what took our daughter away. When I asked him if the advances in research, cures and awareness make him feel better, he replied, “No.” None of it will bring Katie back, so it’s not a comfort to him. Even though it comforts me, I need to filter some of what I ask him to participate in. Fair enough.

Shortly after my book reading event at Eagle Harbor Books in September, Gregg and I attended the Ben Towne Foundation’s annual BENefit. We were “table captains,” which really means that we gathered interested family and friends and all sat together for dinner. The Foundation makes it so easy to “host” a table that I wouldn’t feel right calling it “hosting.” That was the second cancer-related event in a month’s time, but Gregg loves the Townes and wants to support the Foundation.

At the BENefit, Dr. Michael Jensen announced that his work on relapsed leukemia has been given approval by the FDA to move into clinical trials. That means that children here in Seattle who have no other hope than a miracle have a chance at that miracle; they can enter a clinical trial using their own re-engineered T-cells to fight their own cancer. It will begin sometime in the next few weeks.

This announcement brought our table to tears. We were sitting with my parents, brother and sister-in-law, as well as with two other couples who are friends – both of whom have watched their own daughters die from brain cancer. Three sets of bereaved parents heard the news together. It was a dramatic moment, and one that has truly changed my life.

I finally feel relief.

I feel relief, for the first time since Katie died.

Since Katie died, I have felt like the parent of a murdered child. I have felt that the murderer is “at large,” and beyond the capacity of “law-enforcement” to catch. It hurts. I feel it’s my duty as her mother to catch her killer and bring him to justice. I didn’t realize that so much of my work and energy has been directed to catching this killer – but it has.

After the BENefit, several family members and friends joined me for a tour of the Ben Towne Center for Childhood Cancer Research. At the end of the tour, I took Dr. Jensen aside and thanked him. I told him that for the first time since Katie’s passing, I feel as if I can relax. I know that the killer is now identified. We may not have him on death row yet, but his whereabouts are known, and he is in the crosshairs of the law. They are going to catch him, and stop him from killing other children (and adults). This is Dr. Jensen’s mission, and it is now beginning to be available to patients (not just lab mice).

On the tour, my dad asked Dr. Jensen two important questions (and I think I heard the answers correctly):

1)   How much does it cost annually to do what you are doing?

Answer: $1.5 million

2)   How much do you need annually to be able to conduct experiments on the cancers you want to cure next?

Answer: $15 million.

Friends, what is being spent on the next election makes this sum look positively PALTRY. This research has the potential to cure children AND adults. If you know anyone who can contribute to it, please invite them to contact me or the Ben Towne Center. I will be happy to effect an introduction.

What I want most to share with you is the fact that I feel a new freedom now. The baton is in Dr. Jensen’s hands (and those of his colleagues, some of whom were part of Katie’s care team). I will continue to do my best to raise awareness and financial support, but I can finally let go of this part of my work, because it is being done by the professionals. And some of the thanks for that goes to Carin and Jeff Towne, and the memory of their precious son, Ben.

I wasn't aware that I was holding my breath for this to happen, but I have been…and I can rest now. Thank God that prayers are being answered! The timing was not sufficient to save Katie’s life, but I believe that the cure will be part of her legacy.

Thank you for reading my blogs, for commenting, for supporting our family through this time. Though we will never be “over it,” your listening, caring and praying has been part of our healing process. That process continues - and finding a cure for cancer is surely a part of it.

HUGE, Wonderful News

Thank You to our donors for your generosity to the Katie Gerstenberger Endowment for Solid Tumor Research.  update on the endowment’s growth:   Due to your generosity and market growth,   as of March 31, 2012, the market value of the endowment is $167,373. This is a great increase over March 2011, when the total was $140,554. Thank you!  what we are doing with the endowment’s income:  last summer, Seattle Children’s Hospital’s Research Institute opened the Center for Childhood Cancer Research (recently re-named the Ben Towne Center for Childhood Cancer Research in memory of the son of our friends, Carin and Jeff Towne. You can learn more about the Townes’ work at www.bentownefoundation.org.) Dr. Michael Jensen, the director of the new center, is a man of vision, passion and compassion, who is pioneering the use of T-cells to kill cancer, rather than toxic chemotherapy and radiation. His work is a promising new kind of treatment, which has just (last week) received approval from the FDA to commence clinical trials!  No chemotherapy, no radiation, no harmful side effects nor long-term disability, no secondary cancers - this is a treatment protocol of which we have dreamed for many years, and it is about to begin. The income from the Katie Gerstenberger Endowment for Cancer Research is funding this work. Your contributions are supporting research to change the way cancer is treated – for the better. an invitation to see what your donations are accomplishing:  Dr. Jensen has kindly offered to conduct a private tour of the research center (in downtown Seattle at 1100 Olive Way) for our endowment's friends and donors on Thursday, October 11, 2012 at 1:00 P.M.  If you would like to tour the center, meet Dr. Jensen and learn more about the research our endowment is supporting, please let me know by emailing me at karenlboren@yahoo.com. We would love to share this experience with you, and we need to know how many are planning to join us. We are profoundly grateful to be participating in this research, and grateful to you for your donations, which are making this possible.

Center for Childhood Cancer Research OPENS!

This week, on Wednesday evening, my mother and I met Charlotte at the beautiful Hyatt at Olive 8 hotel to join in the celebration of the opening of

Seattle Children's Hospital's new Center for Childhood Cancer Research, which will be led by Dr. Michael Jensen. We listened to brief speeches, and took a tour of the new laboratory facility. If you live in the Seattle area, I encourage you to look up the center, or schedule a tour. It is a light, bright, exciting space, where dreams of HOPE are going to be translated scientifically into CURES. If you are looking for a cause, a place to lend your voice, or a charity to support, please consider the Center for Childhood Cancer Research.

The income from the

Katie Gerstenberger Endowment

for Cancer Research

supports this center and its work.

As of now, the principal in Katie's endowment is

$163,284. 

This is due to the generosity of Katie's family and friends, and

we thank you.

Our aim is to continue to support its growth, and to use the income to help researchers to find cures, so that other families do not have to watch their children suffer or die from cancer!

Please click on the links to read more about this event, and the center itself,
here, here, here and here.

THANKS and HOPE

Our generous family and friends, we

thank you.

The principal balance of the

Katie Gerstenberger

Endowment for Cancer Research

as of August, 2010 is

$121,209.

We will use the income from this principal to continue to fund solid tumor research, per Katie's wishes. The focus of our funding will now be the work of Dr. Mike Jensen, who recently moved to the Seattle Children's Hospital Center for Childhood Cancer from the City of Hope in L.A.

Dr. Jensen is pioneering the use of the body's own immune system to treat cancer. He has succeeded in "teaching" immune system cells to recognize cancer cells, and to destroy them. You can see and hear Dr. Jensen explaining how it works in

this brief video.

Please take a few moments to watch, and be filled with HOPE.

It is happening - our hopes, our prayers, are on the way to being answered. Thanks be to God!

Something Wonderful: HOPE

There is important (and wonderful) news over at Gberger.

Endowment Income - What's in Store for 2010

Katie's oncologist is Dr. Julie Park. Her specialty is neuroblastoma, one of the cancers for which Katie's tumor was initially mistaken. Dr. Park is a highly respected researcher in the field. Dr. Park is our medical advisor on the Katie Gerstenberger Endowment for Solid Tumor Research.

Katie had a biopsy when she was admitted to Seattle Children's Hospital. A biopsy is a surgical procedure in which a small sample of tumor is removed for testing. The purpose is to diagnose exactly what sort of cancer the patient has, so that the treatment can be tailored to wipe it out. Katie's tumor defied pathological diagnosis. At first, it was thought to be a Wilms' Tumor. Then it was thought to be neuroblastoma. After Katie's first round of chemotherapy, Dr. Park began to suspect that it wasn't a neuroblastoma after all, but adrenocortical carcinoma (or adrenal cortical carcinoma), which is much more rare than either of the other two.

Dr. Park conferred with experts in pathology. She communicated with oncologists at St. Jude's Children's Hospital in Tennessee, where the leading research on adrenocortical carcinoma is being performed by Dr. Rodriguez-Galindo and Dr. Rubiero. They shared their protocol for treating this rare disease with Dr. Park, and she changed Katie's chemo regimen to follow the St. Jude's team's protocol. Although the most current treatment was given, and the primary tumor was removed after 5 rounds of chemotherapy, the cancer recurred within a few months (in spite of follow-on drug therapy, as well). The thinking about adrenocortical carcinoma is that it is a slow-growing cancer; this was clearly not the case for Katie! Obviously, more needs to be known about pediatric cancer, which is the main reason why Katie wanted her Endowment to fund solid tumor research. Katie's preference was that it fund adrenocortical carcinoma research, but since that is such a rare disease, her Endowment funds solid tumor research in general, which should benefit all solid tumor cures, in the long run.

Dr. Park plans to use this year's endowment distributions for travel to a conference: the international Advances in Neuroblastoma Research meeting. The meeting will take place in June, 2010 in Stockholm, Sweden. Dr. Park will participate in the exchange of information among worldwide investigators who are studying neuroblastoma biology, diagnosis, prognosis, and therapy.  Dr. Park will be able to share data with cancer investigators who are working at other institutions, and then bring what she learns back to Seattle Children's Hospital, where she will continue her research, and her work as an attending physician.


If you have any questions, please leave them in the "comments" section that follows this posting, and I will reply as soon as possible. Thank you again for your support of Katie's Endowment!