Hair grows back. Kids don't.

Guest post for Peach's Neet Feet. What an amazing organization, supporting kids diagnosed with cancer. Love them!!!  Love, love, love....


"I personally look forward to the day when, overcoming the number one disease killer of children, will be a national health priority everyday of the year - not only in September." ~ Kathleen Ruddy, Executive Director, St Baldrick's Foundation

Every weekday in the United States, 46 families hear these words: "Your child has cancer."

Wednesday, February 25, 2009, our family heard these words. Our youngest, Gregory, was diagnosed with Juvenile Myelomonocytic Leukemia. At the tender age of three. His only option for survival was a bone marrow transplant.

From that fateful day forward, I have networked, read about, learned about, talked with, met and learned from family after family after family affected by childhood cancer.

I have experienced and witnessed the devastation that this diagnosis brings to families and their children. Every ounce of your existence is shattered. Bringing you to places you never thought you could/would go.

Watching the barbaric ways we treat cancer in our children. Experiencing the isolation that this diagnosis and treatment brings. Breathing through wave after wave of anxiety as each day, week, month passes.

When Gregory was first diagnosed, my knowledge of cancer was cursory. My thoughts were: "A little bit of chemo and you're good." Oh how wrong my naive mind was.

These kids experience months and years of toxic therapies. Chemotherapy may rid a child's body of cancer, but did you know that it also causes cancer? Did you know that radiation causes cancer? Did you know that these kids face life long complications?

People Against Childhood Cancer

• One in five children/teens diagnosed with cancer do not survive.
• Three of the four survivors face at least one life-long, chronic, life threatening condition.
• These children are frequently left infertile.
• They face neurological and developmental deficits.
• Growth Failure
• The average life span for a childhood cancer survivor is 30 years post diagnosis.

The list goes on and on and on. While my son, Gregory, is surviving, it has come with a significant price tag.

I am one of the 46. I am one of 46 Mommas Shave For The Brave. 

In September of this year (2011), I joined 45 other Momcologists (Mothers of children diagnosed with cancer), at Union Station, Washington, DC. The 46 of us shaved our heads for childhood cancer research and awareness for The St Baldrick's Foundation. We have been tirelessly raising awareness and fundraising for St Baldrick's to fund life saving childhood cancer research. As of the time of this entry, we have raised $333,200 for St Baldrick's in 2011.

Shave for the Brave from SocialStudiesDC on Vimeo.

Going bald for childhood cancer research is the easiest thing I have ever done. 

"Hair grows back. Kids don't." 

MindiTheMagnificent Before

MindiTheMagnificent After! Notice that grin? Yee haw!

Namaste
MindiTheMagnificent
~Momcologist

The Greginator, today. 2 1/2 years post Bone Marrow Transplant. 

I say YES to LIFE.

I give myself TOTAL PERMISSION TO FOLLOW MY HEART 
to listen to my desires 
to love myself completely 
to make myself happy & joyful 
to be deeply fulfilled 
and live in purposeful ecstasy. 

My body is an Open & Receptive temple for Divinity, Joy, Bliss, Fulfillment & Soulful Purpose to embody within. 

I give myself COMPLETE PERMISSION to turn myself on 
to bathe in love 
& to embody the grace & wisdom of feminine divinity. 

I am an activated Goddess overflowing with an abundance of Love, Joy, Bliss, Self-Love, Wisdom, Life Force Energy & Soulful Healing Creativity. 

I say YES to Fulfillment 
I say YES to Heart Wisdom 
I say YES to Authentic Desire 
I say YES to Joy 
I say YES to Creativity 
I say YES to Sensuality 
I say YES to My Soul's Purpose 
I say YES to Sexuality 
I say YES to Abundance 
I say YES to Freedom & Liberation 
I say YES to LIFE.

NaBloPoMo.......*crossing fingers*

I recently mentally committed to doing NaBloPoMo this year (again!). I've never completed a NaBloPoMo and this year started out no differently. I realized November had begun and a post was due around 10:00 the evening of the first. Oops!

There is lots going on and much to write about, I just have  not had the discipline to sit and write. Frankly I have not had the discipline to do much, as of late. Still digging myself out of a slump and trying to 'live' this life we now have. Gregory's health has been incredibly stable *knock wook*. He has been receiving IVIgG every four weeks and has yet to catch a respiratory or viral illness. Granted his exposure has been kept to a minimum. At his last clinic visit his Doc and I discussed whether or not his antibodies would return if he was never sick. Meaning.... how can we challenge the function of his antibodies if he is not exposed to anything. Which means that we have loosened the reigns even more. Since that visit two weeks ago, Gregory has played mid-day at a McDonald's Play Place and been to two LARGE school functions for AnnMarie's elementary school. Plenty of exposure in those three events and he has not developed any cold/flu symptoms. At his next visit on the 17th, we will also be taking another look at his IgA and IgM levels. Which can help to create a better picture of what might be happening with his immune system. I'm not expecting anything to be different that it was in June. The support he is receiving with monthly IVIgG is working to keep him out of the hospital and symptom free. I can't ask for much more than that. He has been free of immune suppressant drugs for three months. Over that time frame his eosinophils (another cell among your white cells) have been slowly creeping up. These cells indicate inflammation in the body.  This could indicate that Gregory is getting ready to have a GVH flare. 'Could' being the operative word. Which does not mean I'm casual about it. I've read too much on GVH and heard account after account of patients that have really bad flares between years 2-5. With GVH it can strike the body anywhere. Not just where Gregory was originally afflicted. With many areas of the body, if GVH strikes, the damage done is irreversible. Catching and treating it early is key. I may be a little hypersensitive about monitoring him, but irreversible organ damage is not something I want to have happen. Just another piece of vigilance.

I am a wee bit over committed. Over committed mentally, but certainly not physically or time wise. In order to help settle my heart, my mind and my body I've taken up the practice of Ashtanga Yoga at Spokane Yoga Shala. I am loving it. It is bringing me an awareness of my body and how I have carried these last several years worth of stress and anxiety.  Could not be happier with the studio and it's instructors either.

We are very lucky to have an amazing pediatric palliative care team at Sacred Heart Children's Hospital called the Sunflower Program.  They hold a pediatric palliative care conference in the fall and this year's conference is Thursday night and Friday. As an involved parent, I was asked to share our story with the conference attendees. This conference is for doctors, providers of care, nurses and patient families. I attended last year and it was a great event. Below you will find our story that will be shared on Friday. This is just a snippet of our story, but hopefully it expresses to the audience how our family fits within the palliative care community.

I've been asked on several occasions to share our story. This is the first time I have tried to convey our story in a public setting. If I were to sit down and write our story, it would be many pages long. One day I will. I will write a narrative of our timeline. For now, I am sharing the bits and pieces that are applicable to the audience that will be hearing it. Which is sometimes very hard to figure out what the focus and intent is of sharing our story. This seems to be my biggest hurdle. Yet, once I have a point to focus on, the words flow.

Hopefully I'll be back to share something tomorrow. It would be very rewarding to blog everyday for a month. I know my brain could use it.

As always, love, love, love....
Mindi
~Momcologist

In June of 2005 we welcomed our last child to our family. Gregory Miles Bibb. He was preceded by AnnMarie in 2002 and Curtis in 1998. We were now a family of five. Each member of a family has unique attributes. Gregory's are light and grace. He truly is the light of our family. 

In February of 2009, Gregory developed a resistant cold which lead us to an emergency room visit for IV fluids. Gregory did not respond to IV fluids which resulted in a CBC. With this one simple blood test, our lives were rocked to their core. Gregory was eventually diagnosed with Juvenile Myelomonocytic Leukemia, at the tender age of three. The nature of his disease meant we would go immediately to bone marrow transplant. Do not pass go, do not collect $200. Chemotherapy alone will not destroy this disease. We began the bone marrow matching process to see if the siblings were a potential bone marrow match. They were not a match and we spent six of the LONGEST weeks of our lives, anxiously waiting for the phone call that would notify us of the possibility of saving Gregory's life. The magical phone call came on April 21, 2009. We had a 10/10, 23 year old female match. Gregory's work-up was scheduled to begin May 12, 2009 with transplant on June 10, 2009. In the meantime, he had been receiving daily, oral, low dose chemotherapy to keep his disease at bay. He also received supportive platelet and red cell transfusions. We were in clinic no less that twice a week. With a handful of admits thrown in for respiratory infections.  

Bone marrow transplants are not available in Spokane. Gregory and I left Spokane on May 11, 2009 and traveled to Seattle, Washington. Seattle Cancer Care Alliance, Seattle Children's and Seattle's Ronald McDonald house became our home for the next five months.
Due to the intensity of treatment with a bone marrow transplant, we were introduced to the idea of palliative care at our first conference with the team at Seattle Cancer Care Alliance. Seattle Children's Mark Power was an integral part of our BMT team and our stay at Seattle Children's. I am forever grateful for the role that Mark played in Gregory's transplant experience. During our stay in Seattle Gregory spent 12 plus weeks inpatient. Living in the hospital became a way of life. 

We returned to Spokane in October of 2009. Gregory remained incredibly medically fragile. During Gregory's first year post diagnosis, we spent over 26 weeks inpatient. One thing Gregory's team of medical care providers helped us to understand is the concept of 'living' in the hospital, instead of just 'staying' in the hospital. While having to be inpatient is a bummer, we have completely surrendered to the fact that when he is inpatient, it is where he needs to be.
This Odyssey has changed our family and our lives. Each and every one of us. When a child is diagnosed with a life threatening condition, the entire family is diagnosed. Gregory currently has no evidence of his original diagnosis of JMML. Yet, his health status is complicated and incredibly complex. Due to the intensity of his treatment and his tender age, we know not what tomorrow will bring. Each milestone is anticipated with bated breath. Each clinic visit, every 28 days, brings a sleepless night before and nagging thoughts of "Has it returned?".
The greatest myth about childhood cancer is that we will one day be 'done'. I tell people, 'Like dishes and laundry, childhood cancer is never done.' Thankfully we are part of a very strong community, not only childhood cancer families, but families that have life changing medical diagnoses with their children. The richness of this community is what keeps me engaged, supported and validated. With ever so faint glimmers of hope.  

"We may not live in the past, but the past lives in us." ~Samuel Pisar, Holocaust Survivor

October 2011 ~ The Greginator

Look what I did......

Many thank yous to Buck from Birds Eye Tattoo in Spokane, WA.

46 Mommas ~ The Event

I've been wanting to write about my week in DC and 46 Mommas. I'm pretending that I have a clear mind and a clear vision of what I want to convey..... Ha!

First and foremost, DC blew my mind. I'm not a well traveled being. This was my first trip to DC and my first real glimpse into the colonial beginnings of our country. The entire five days that I was there, I kept thinking.... "Am I really here? Is this really happening?" The days flew by in a frenzy. So much going on, so many people to meet. I only had time to meet/talk to a fraction of the people that I wanted to.

I have been spending quite a bit of time on the 'why' of shaving my head. Yes, having the opportunity to meet these amazing women, their families, their friends and the people who support childhood cancer families was a thing I could not pass up. Seeing these faces in the flesh, instead of words/images on a computer screen was amazing. These are people who understand what we have been /are going through without me having to say a word. These people that kept me connected during months of isolation. We came together to do something even more important, though.

I went to DC to work. I only realized this as the events began to unfold. I came home with an ownership of what we did and why. I came home with the realization that, YES, I can make a difference.

The work that we accomplished is multi-layered. The obvious and sometimes overlooked main point, was to raise money for the St Baldrick's Foundation. In order for them to fund childhood cancer research. This is my number one charity for supporting childhood cancer research. I've spent many an hour thinking about this decision. Gregory's cancer is very uncommon. 25-50 cases diagnosed in the US every year. We are fortunate to have a foundation to support Juvenile Myelomonocytic Leukemia. The JMML Foundation.  They do fund research specific to JMML and I have gone round and round in my heart, thinking about how to support them. They also support JMML families. At this point there are two roads of 'treatment' for JMML. One is stem cell transplant. The other is if the kiddo also has Noonan's Syndrome and the JMML stabilizes. Strange, I know. Right now, I feel that my support of childhood cancer research through St Baldrick's is going to yield a higher benefit ratio for the childhood cancer community. Which does not mean I've left our foundation out of the picture. I just have yet to figure out how I will support our community in a meaningful way. I must admit that my fundraising efforts for my personal goal fell very short. I have never done anything like this before and this experience taught me a lot about fundraising in general. I do know that although my dollar amount is low, this is not the only time I will participate. I also know that our combined efforts have created life-long supporters of St Baldrick's. Which is just as important as my individual efforts.

Memorable moment:
Early Wednesday morning a few of us headed over to Union Station to check out the site, hang hope flags

and talk to the production company. The event was in the Main Hall of Union Station and we had a beautiful 7'x8' banner hung between two pillars, right where the stage was set up.


As we were milling about a woman approached us, practically in tears. She then told us this....she was on her way to work, had a late night and was heading to get a coffee in the station. Something she does not customarily do. She noticed our banner, saw the awareness ribbon out of the corner of her eye. Thinking it was a pink ribbon she initially didn't give it a second thought. Then it struck her. The ribbon was GOLD. Gold for childhood cancer awareness. She came over to check out what was going on. Then her story was revealed. Her son just past one year post-bone marrow transplant for relapsed ALL. Her emotions over finding the gold ribbon in Union Station was overwhelming. For all of us. We walk through our days, feeling all consumed by this thing, CANCER, that has appeared on our doorsteps. Yet terribly isolated. This small encounter let this mom know that she is not alone. She matters, her child matters, their family matters. Childhood cancer matters.

The shave itself was emotional. Chaotic. Three hours flew by in an instant. Not too long before the event, I had reached out to a fellow JMML family. They live in Arlington, VA which is not far from DC. I was hoping that we could meet while I was in DC. The Barnes family came up to DC for the event. Not for the event, but a chance for us to meet. Kelli is heavily involved with the JMML Foundation and it was so great to sit down with her and her husband. They also had their two little guys with them. They are a family who do not have a JMML survivor. Kamran was not with us, but was very much with us, as we talked about this disease and this experience. They are a great family and I feel so very lucky to have been able to sit down with them.

Dr Peter Adamson was one of our key note speakers. He is the chair of Children's Oncology Group. He also spoke at the PAC2 workshop on Thursday and the Childhood Cancer Caucus Summit on Friday. I know I keep using the word amazing, but it just fits. He is devoted and inspirational.

This video was put together by Social Studies DC. They were able to grab the highlights of the night and the nuggets. Can't tell you how awesome this is.


Shave for the Brave from SocialStudiesDC on Vimeo.

"I personally look forward to the day when, overcoming the number one disease killer of children, will be a national health priority everyday of the year - not only in September." ~ Kathleen Ruddy, Executive Director, St Baldrick's Foundation

Our professional barbers for the night were from PR at Partners. They were phenomenal. In fact, one of the stylists was so moved that she sat down in that chair and shaved her head, too. From many of them we heard that this event was one of the most powerful things they had ever been a part of.

We even had a post-shave glam station! We received mini make-overs to help us feel pretty in our first hours of being bald. Votre' Vu was our make-up sponsor and it was FUN! I know for myself, I felt flippin' stunning the whole night. THANK YOU! (It was amusing to discover that these high-end make-up artists use the same brand of mascara as I do. The classic pink & green tube of Great Lash!)

Since that brief experience in the barber's chair, I have never felt so beautiful. Listen To Your Mother helped me to reclaim my strut. 46 Mommas helped me to reclaim my beauty. It's the first time, ever, I have felt truly comfortable and willing to be in front of a camera. Strange, but I'll take it.

I'll have to share more later. For now here are some pictures from the event. Courtesy of:
Tim Coburn Photography
Julie Stewart Photography
Shay Holman, Elite Image Photography
Cipriana Thompson, Soulfully Speaking
Margaret Walker
Michael Crane
Manibu Yoshinaga
Dari McManus
Greg Blakey Photography

More photos can all be found on our 46 Mommas website under Multimedia, listed by photographer.




The fundraising year is not over.....we have through the end of 2011 to reach our goal. As of today, our event has raised $320, 225. We are number 5 for St Baldrick's top events. It would be awesomesauce if we could bump even higher! No donation is too big or too small. If you are a family that gives to charities for the holidays, please consider this one. I'll be asking again as we get closer, just wanted to start planting seeds.

My personal goal is $5,000. I've currently raised $2,445. Which is not even half way. Here's my participant page.....Momma MindiTheMagnificent.  Thank YOU!

As always.....love, love, love. Fierce Momma Love!
MindiTheMagnificent
~Momcologist

46 Mommas National Press Release

 Via: http://46mommas.com/

46 Mommas: Shave for the Brave 2011 St. Baldrick’s Foundation Head-Shaving Event to Help Conquer Kids’ Cancer!

 Press

BALD MOMS MAKE A BOLD STATEMENT DURING CHILDHOOD CANCER AWARENESS MONTH

Download this press release in PDF format.

LOS ANGELES (September 13, 2011) — It takes 46 Mommas in Washington, D.C., to Conquer Kids’ Cancer! The St. Baldrick’s Foundation, a volunteer-driven charity dedicated to funding childhood cancer research, announces the second annual 46 Mommas: Shave for the Brave event taking place at Union Station in Washington, D.C., on Sept. 21. In addition to the 46 Mommas, NBC Washington's, Angie Goff, will emcee and serve as a celebrity barber for the event. Each of the 46 Mommas has heard the dreaded words “Your child has cancer,” and decided to get bald during September in recognition of Childhood Cancer Awareness Month.

Why 46? Because on average, each weekday 46 families receive the news that their child has cancer. Comprised of 46 mothers from across the U.S., the 46 Mommas are on a mission to raise awareness and funds for life-saving childhood cancer research and inspire others to join in the fight toConquer Kids’ Cancer. By shaving their heads in solidarity with not only their children, but every child affected by cancer, the 46 Mommas hope to raise $1 million. Having raised more than $319,700 this year for kids’ cancer research, the group has already surpassed last year’s event total.

“To see 46 mothers come together to take a stand against a disease that threatens their children’s lives, is powerful,” says Kathleen Ruddy, executive director for the St. Baldrick’s Foundation. “Although they are from all walks of life, they share in an experience that will bond them forever, fighting childhood cancer. They have directed their energy toward a positive endeavor and have been triumphant in their efforts to raise awareness and funds for childhood cancer research. St. Baldrick’s is honored to have the support of the 46 Mommas.”

The 46 Mommas are honored to have several sponsors supporting their efforts. Champion level sponsors include BIO, Granted Peace Services, Inc., Inspire, PR at Partners Salons and Spas, Tim Coburn Photography, von Elling Imageworks and KPMG LLP.

Do your part to support the 46 Mommas and St. Baldrick’s! To locate or organize an event in your community,sign-up to shave, donate or volunteer, visit www.StBaldricks.org. You can also become a fan on Facebook, follow us on Twitter, join our letsCONQUER movement and visit the St. Baldrick’s YouTube and Vimeochannels.

About the St. Baldrick’s Foundation

The St. Baldrick’s Foundation is a volunteer-driven charity committed to funding the most promising research to find cures for childhood cancers and give survivors long and healthy lives. The Foundation funds more in childhood cancer research grants than any organization except the U.S. government. St. Baldrick’s funds are granted to some of the most brilliant childhood cancer research experts in the world and to younger professionals who will be the experts of tomorrow. Funds awarded also enable hundreds of local institutions to participate in national pediatric cancer clinical trials, a child’s best hope for a cure. Since the Foundation’s first grants as an independent charity in 2005, St. Baldrick’s has funded more than $76 million in childhood cancer research. For more information about the St. Baldrick’s Foundation please call 1.888.899.BALD or visit www.StBaldricks.org.

About the 46 Mommas

We ARE 46 Mommas on a mission to raise awareness, raise funds for research and inspire others to help fund a cure for childhood cancer.

Each year a new class of 46 Mommas is inducted into the cause to empower and engage mothers of children with cancer. The number 46 is significant. On average, each weekday, approximately 46 families receive the news that their child has cancer. Through increasing awareness of childhood cancer and raising funds for childhood cancer research by shaving our heads, we hope to one day be a group that no longer needs to exist.

Support the 46 Mommas by visiting the 46 Mommas event page or website and become a fan on Facebookor follow them on Twitter. Contact the 46 Mommas at info@46mommas.com.

###

Meet The Mommas & Our Honored Kiddos

We still need you, though. "Many hands make light work." The 46 Mommas have issued a $10 Challenge. Via our FaceBook fan page:

"Take our 2-Weeks-to-go-$10-challenge! Help us get closer to our goal of $1Million for St. Baldrick's. If each 1 of our fans donates $10 we'll be $95,630 closer to helping fund lifelong cures! Can you skip 2 coffees this week? Pass on a trip to the movies? Or brown bag lunch? Donate the $10 you save to our event (or the Momma of your choice) to help CONQUER kids' cancer!"

To take this challenge, you can donate on my noggin here: http://www.46mommas.com/mindifinch/

To view what we have raised for our campaign, so far: http://www.stbaldricks.org/events/46mommas/

I want to thank each and every one of you who have donated, so far. While it may not seem like much, I know that you have opened your heart to a world no one really wants to know anything about. I thank you for the piece of your heart that you have offered to all kids. If you've been meaning to make a donation and can make one before the shave, it would help me get that much closer to my goal of $5,000.

If you would prefer to mail a donation in:
St Baldrick's Foundation
1333  S. Mayflower Avenue, Suite 400,
Monrovia, CA  91016

Donation form with my name and participant ID already completed.

Love, love, love...

Mindi

~Momcologist

People Against Childhood Cancer (PAC2) Update ~ September 2011

Such vital information to share. Not my words. Just getting the word out. 
Mindi
~Momcologist

PAC2 Update ~ September 2011

Welcome to National Childhood Cancer Awareness Month.

Here's to a day soon when it's not needed. Until we get there we fight on and we see hundreds of events and efforts by the entire childhood cancer community going on this month.  Today we'd like to share some news about events in Washington DC this month, along with great news about a cooperative and collaborative effort by the community. 

National Public Service Announcement

Numerous national childhood cancer organizations and dozens of local and regional ones have taken unprecedented steps to collaborate and support the production of a radio Public Service Announcement and the KidsCancerFight.org website. The PSA is running nationwide during the month of September! This project developed from the PAC2 Workshop in March 2011 organized to bring the childhood cancer community together to identify collaborative ways to make the work of childhood cancer organizations more efficient and effective. In the Workshop the membership group (consisting of over 30 childhood cancer organizations) elected to develop a national PSA for use as a call to action in the fight against childhood cancer. The PSA (listen to 8 year old Tony here courtesy of Alex's Lemonade Stand Foundation) encourages listener's to visit the website KidsFightCancer.org where they can browse and connect directly with numerous national and local childhood cancer organizations. Please share!

Childhood Cancer Awareness Month

President Obama declared September National Childhood Cancer Awareness Month, as you likely know. Childhood Cancer Awareness Month represents an annual opportunity for supporters nationwide to focus on and bring awareness to the challenges of childhood cancer. This year, there will be a series of events taking place in Washington, D.C. to help achieve our common goal to eliminate childhood cancer. Our organizations have come together to coordinate efforts, educate lawmakers, and ensure that our voices are heard in the nation’s capital.

Visit Childhood Cancer Awareness Month - Washington DC Activities to read more about the efforts of St. Baldrick's, 46 mommas shave for the brave, Children's Cause for Cancer Advocacy, Hyundai Hope on Wheels and the Fall 2011 PAC2 Workshop!

46 mommas shave for the brave

These ladies, moms of children effected by childhood cancer, stood proud and bald in front of a national television audience on the Stand Up To Cancer broadcast last Fall. This team supports the efforts of the St. Baldrick's Foundation, and has a long history here at PAC2!   This year they are shaving at Union Station on Wednesday, September 21!  Visit 46mommas.com to learn more about these incredible moms.

Creating Hope Act

On Thursday, September 22nd, Congressman Michael McCaul (R-TX-10) and Congressman G.K. Butterfield (D-NC-1) will be introducing the Creating Hope Act in the House of Representatives.  If passed, this bipartisan legislation would incentivize pharmaceutical companies to develop new drugs for rare pediatric diseases, such as childhood cancers.  Senators Bob Casey (D-PA) and Scott Brown (R-MA) have introduced a companion bill in the Senate. Read more about the Creating Hope Act.

Childhood Cancer Summit

On Friday, September 23, 2011, the Congressional Childhood Cancer Caucus will host the second Childhood Cancer Summit on Capitol Hill. The event will feature a panel of experts speaking on the challenges and opportunities in pediatric oncology drug development. Children's Cause for Cancer Advocacy (CCCA) is pleased to be working with advocates and Congressional champions to help educate lawmakers and the public about these critical issues. The Summit, which is targeted toward Members of Congress, Hill staff, and advocates, is an educational forum to bring awareness to the unique issues facing children with cancer, survivors, and their families. The event is at the Capitol Visitors Center (CVC) Auditorium on September 23, 2011 from 8:30 to 10:00 AM. The event is open to the public, no registration is required.

Panelists will include: 

• Dr. Peter Adamson, Chair of Children’s Oncology Group (COG), will discuss reauthorization of the Best Pharmaceuticals for Children Act (BPCA) and Pediatric Research Equity Act (PREA), including his recommendations for improvement of these two laws;
• Dr. Ron Portman, Development Lead, Pediatric Center of Excellence, Bristol Myers Squibb (BMS) and Chair of BIO’s Pediatric Drug Development Committee, will discuss the pharmaceutical industry’s perspective on pediatric cancer drug development - challenges, process, and recommendations from industry;
• Dr. Eugenie Kleinerman, Head of the Division of Pediatrics at M.D. Anderson Cancer Center, will discuss clinical trials, effects of adult drugs on children; and
• Nancy Goodman, Executive Director of Kids V Cancer, will discuss the Creating Hope Act and incentives for pediatric cancer drug development.

Hyundai Hope on Wheels

Following the Caucus, on Friday, September 23, Hyundai Hope on Wheels will hold a Press Conference, open to the public, at which they will make a major announcement on the work that Hope on Wheels is doing on behalf of pediatric cancer. An important highlight of the event will be the recognition of four local hospitals that are September Hope Grant winners: Georgetown University Hospital, Johns Hopkins, Inova Fairfax and Children’s National Medical Center. The ceremony will immediately follow the Childhood Cancer Summit discussed above. Both events will celebrate the progress we have made in fighting pediatric cancer, while continuing to raise awareness around the issue.  This event follows the Childhood Cancer Summit in the CVC and is open to the public, no registration required.

PAC2 Workshop

On Thursday, September 22 PAC2 will hold its second Workshop. The Fall PAC2 workshop will build on the success of the Spring 2011 Workshop by continuing to focus on the issues and opportunities within the childhood cancer community and how our community can collectively respond. The workshop will have three themes:

• COMMUNICATING: We will update attendees on current projects and discuss existing barriers that the larger group can help overcome - this helps to reinforce one of the core values of PAC2: action.
• INSPIRING: We will learn from experts outside the childhood cancer community about how other diseases and causes have effectively marshaled resources to help achieve their goals - this helps to reinforce the core PAC2 value of innovation.
• IDEATING: We will explore pending projects and propose new ones - this helps to reinforce another core value of PAC2:collaboration.

We are honored and thrilled to announce that the Workshop will feature a wonderful pair of keynote speakers: Ronnie Tepp and Michael Manganiello of HCM Strategists, the co-authors of the report Back to Basics: HIV/AIDS Advocacy as a Model for Catalyzing Change. The Wall Street Journal says “[the report] analyzes the factors that helped patient advocates drive research into and drug development for that disease" and stresses the importance of “creating a sense of community among advocates so that different groups are driving towards a common goal”.

Following their keynote, the group will engage in break-out sessions to identify and target fundamental, community-wide issues and opportunities.  Teams from various organizations hope to cooperate to accelerate movement towards our shared goal of a 100% durable cure rate for childhood cancers, while minimizing long-term side effects for patients.

Any questions or comments, please contact us at info@PeopleAgainstChildhoodCancer.org. Thanks for all you do.

PAC2

"A small group of thoughtful people could change the world. Indeed, it's the only thing that ever has."  -  Margaret Mead