A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘B+ Foundation’

Time to Take Action– 2014 Childhood Cancer Action Days

2014 Childhood Cancer Action Days

Registration opened today for the 2014 Childhood Cancer Action Days in Washington, DC. The Alliance for Childhood Cancer will be the host of this two-day event that will encompass advocacy training and Capitol Hill meetings with Congressional Representatives. The training will take place at the American Society of Clinical Oncology (ASCO) in Old Town Alexandria, VA. Childhood Cancer Action Days not only educate people who want to learn more about how they can institute change, but they provide everyone in the childhood cancer community an opportunity to share their concerns about current issues before Congress.

Schedule

Monday, June 23, 10:00 am- 6:30 pm / Training and issues presentation, by Soapbox

Tuesday, June 24, 8:00 am- 5:00 pm / Kick-off and Hill visits

The Alliance for Childhood Cancer is a uniting force in the childhood cancer community. The following is a list of members in their organization from their website.

American Academy of Pediatrics , American Cancer Society , American Cancer Society Cancer Action Network , American Childhood Cancer Organization , American Society of Clinical Oncology , American Society of Pediatric Hematology/Oncology , Association of Pediatric Hematology-Oncology Nurses , Association of Pediatric Oncology Social Workers , B+ Foundation , Children’s Brain Tumor Foundation , Children’s Cause for Cancer Advocacy , Children’s Oncology Group , CureSearch for Children’s Cancer , Leukemia & Lymphoma Society , National Children’s Cancer Society , Pediatric Brain Tumor Foundation , Sarcoma Foundation of America , Society of Pediatric Psychology , St. Baldrick’s Foundation

Melinda and I just registered. I encourage others who share our passion to make a change in the world of childhood cancer to do the same. You don’t need to be a member of any of these organizations to register; parents, survivors, and all advocates are welcome.

We need research. We need less toxic treatments. We need access to medicines. We need supplies of medicine that don’t run out. And the list goes on…

This is the registration link!

http://www.allianceforchildhoodcancer.org/events?eventId=855348&EventViewMode=EventDetails

H.R. 2607: Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act

https://www.govtrack.us/congress/bills/113/hr2607

H.R. 2019: Gabriella Miller Kids First Research Act

https://www.govtrack.us/congress/bills/113/hr2019

We need to act and do much, much more to end the suffering of our children. Please join Melinda and many others who are devoting their lives to make sure there is change for the better.

Bear and Chemo Bag

Guest Blogger: Lee Marchiano

 

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Delaney Clements, Kamryn Renfro, and a St. Baldrick’s Shave Challenge for Caprock Academy

Kamryn Renfro has taught our entire nation a lesson in friendship. Just 9 years-old, she shaved her head in solidarity for her friend, Delaney Clements, who is battling cancer. Like I wrote yesterday, kids teach us. I imagine what a great friend Delaney must be to Kamryn for her friend to want to do this for her, and I applaud the compassionate selflessness Kamryn showed with her beautiful act of love for her friend. However, Caprock Academy, the school Kamryn attends in Grand Junction, CO, sent her home on Monday, stating she was violating their dress code. She could come back if she wore a wig.

The dress code “was created to promote safety, uniformity, and a non-distracting environment for the school’s students,” Catherine Norton Breman, president and chair of the academy’s board of directors, said in a statement.“

There is so much wrong with this, I do not even know where to begin!

Number 1:

I do not understand a school “dress code” that does not allow “bald heads.” There are people who cannot help being bald—including kids with cancer. Are we actually this unaware that kids get cancer? Is it not enough that children stricken with cancer have to lose their hair? This “policy” is antiquated. Will Caprock Academy send a child who is fighting cancer home until they come back with a wig? Ugggggggh! Please, Caprock Academy, strike that policy down now!

Number 2:

Hello, compassion? This is a crystal-clear example of selflessness. This is a brilliant example of friendship at its best. I would love to see Kamryn honored rather than reprimanded. I would love to see Delaney honored for the beautiful person she must be to have a friend who loves her so. These are the exact values we need to be teaching our youth. Let’s make an example of them, and honor them.

Number 3:

On Tuesday, the school’s board of directors took a vote that allowed Kamryn—with a special “waiver”– to come back to school. The vote was 3-1 in her favor. 3 to 1? Who is the “1,” and what objection could they possibly have? Gosh, if I could speak with that person… if I could open up that brain… or maybe that isn’t the problem area. It very well could be the heart.

Number 4

May this media storm bring lots and lots of attention to St. Baldrick’s Foundation—and not just attention, but throngs of people willing to shave their heads to help raise money for pediatric cancer research. Wouldn’t it be FANTASTIC if the Caprock Academy administrators atoned for their error by shaving their heads for St. Baldrick’s? We all make mistakes. We are all on a path of learning to become better people. There is nothing like turning mistakes into victories. I say, “Shave!”

“The whole reason we chose head shaving was to be in solidarity with kids who are going through treatment. I can’t believe people could miss the point like this.”

– Tim Kenny, co-founder, St. Baldrick’s Foundation

News Stories

http://www.foxnews.com/us/2014/03/25/girl-barred-from-school-for-shaving-her-head-to-support-friend-with-cancer/

http://www.denverpost.com/news/ci_25418689/girls-shaved-head-draws-national-furor-at-grand

More about Delaney

https://www.facebook.com/donationsfordelaney

http://www.miraclepartyfoundation.org/#

Melinda's St. Baldrick's Shave

Melinda’s St. Baldrick’s Shave

B+ Foundation "It

 B+ Foundation! Hope Tour 1

bepositive.org

 

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Skipping and Squealing with Squeaky Shoes On

Grace: A Child’s Intimate Journey Through Cancer and Recovery

 

 

“Snowflakes are one of nature’s most fragile things, but just look at what they can do when they stick together.”

Unknown 

 

 

Something that never ceases to amaze me, with the more I learn about the children and families affected directly by childhood cancer, is the sheer multitude of them who become passionately involved in ending the suffering of children with cancer. This alone speaks volumes. My heart breaks for the families who no longer have their child by their sides. And here they are, fighting for our kids of the future… making sure that no child has to face what their child faced.

If people could see how hard they are working, or even feel a glimpse of their pain and loss, all of humanity would step up as an enormous support system to help them in their mission– and to honor and recognize the bravery of their childhood cancer heroes. 

At the very top of our “To Do List,” as a World, Country, and as People, is to help fight for the children who have no voice. Children fighting cancer are too busy fighting to have a voice, and too young to articulate their needs to the adult world. Somehow, these kids make the world brighter, even though their own world is falling apart. I want to recognize them and honor them. I saw a little girl and boy skipping and squealing through a store with their Squeaky Shoes on, and I thought…

“That’s what I want for all kids.” 

If you want this for all kids, there are many things you can do to help get rid of the Childhood Cancer Monster. 

Alexa Nawrocki 

My mom and I had the honor and great pleasure of meeting Joann Nawrocki of Alexa’s Foundation during the Hope Tour of Summer 2011. Alexa lost her battle to cancer, but Joann has worked tirelessly to bring Alexa’s love and light to other children fighting cancer. We love you Alexa! We love you Joann!

Joann Nawrocki
Alexa Nawrocki Pediatric Cancer Foundation

Someone else Mom and I had the honor of meeting during that time is Ali McDonough, and her father, Joe. Please vote for Ali McDonough B+ Foundation. She is up for an award, and she really, really has earned it. After the loss of her brother, Andrew, she has turned her loss into hope for children with cancer. Thank you Ali!

http://www.nascar.com/promos/bettyjanefrance/vote/thank_you.html

Please take a moment to vote for Ali– B+Foundation!

Another way you can support these families and honor the children…

The Isaiah Alonso Foundation Chase Community Giving and Ethan Jostad Foundation

(You can vote for two! Just a moment of your time!)

https://www.facebook.com/ChaseCommunityGiving/app_162065369655?cv=2&app_data=ein|38-3818833

https://www.facebook.com/ChaseCommunityGiving/app_162065369655?cv=2&app_data=location|/charity/view/ein/45-3049472

If you have not seen them yet, here are the first two previews for The Truth 365. 

Day one Preview of TheTruth 365

http://www.youtube.com/watch?v=URnulziqMNA&feature=plcp

The Truth 365 Day 2 Preview Campaign

http://www.youtube.com/watch?v=djGaTAlfrXE&feature=youtu.be

This includes The Truth 365 Interview with Talia… before she knew her dream to meet Ellen would come true!

One more thing I want to share with you today is the inspiring story of childhood cancer survivor, Sabrina Cannella.

http://www.yorkregion.com/news/article/1502520–people-we-love-sabrina-cannella#.UFO__k_ooO8.mailto

I am in awe of what families and survivors are doing for our kids of the future. I imagine what can happen with the support of our communities, businesses, and government. I know there can be a day when all kids can skip and squeal, with their greatest care at that moment being that their shoes light up and squeak.

 

 

 

 

 

 

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Leaders Who Lead

Grace: A Child's Intimate Journey Through Cancer and Recovery

In a world where we are lacking respect and trust for our elected officials, I have a huge breath of the freshest air you could ever imagine.

Ready?

Deep breath in…

The Andrew McDonough B+ Foundation: Delaware State Representative Greg Lavelle is, again, donating his pay raise to charity. For the second year in a row, he has selected The B+ Foundation as one of the beneficiaries of his salary hike!

 Delaware State Representative Greg Lavelle – GregLavelle.com

www.greglavelle.com

Okay, now let that breath out in one great big whoooooooooooooop! Representative Greg LaVelle is a total stranger to me; at the same time, if I ever met him in passing, I would feel obligated to squeeze the ever-loving stuffing out of him (maybe I could donate that to The Blanket Fairy!)

You know me by now– always looking for those undiscovered, creative ways to help children with cancer! Speaking of creative ways of raising money for pediatric cancer research, Rally Foundation is quite clever…

Rally Foundation

I am happy to be teaming to help Rally Foundation raise money for pediatric cancer research during the month of September!

https://www.facebook.com/photo.php?fbid=10150375068436042&set=at.366729161041.189443.58432741041.100000747848829&type=1&theater

Rally Foundation and Grace $ for Pediatric Cancer Research

Blackstone Wine– Corks Against Cancer

“Blackstone Wine is donating $1 to Rally Foundation for Childhood Cancer Research for every bottle sold in Sept/October for their Corks Against Cancer campaign! This opportunity is nationwide, go buy a bottle (or case) today, tell your friends, and share the page! Cheers!”

Rally Foundation– 46 Faces of Cancer

http://www.youtube.com/watch?v=D4YPtRk1myI

Continuing on the 46 faces theme… tomorrow, there will be live video of the 46 Mommas doing what they gathered in Washington D. C. to do.

http://www.ustream.tv/channel/bald-moms-rock-46-mommas

http://46mommas.com/index.php/in-the-news/press/item/press-release-sept-13-2011.html

Sleep well tonight Mommas. May you dream of a time to come very soon where each of our elected officials, and each of our citizens, place the needs of the children above their own. Thanks for leading us.

May God’s blessings rain down mightily upon you.

 

 

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Butterfly Kisses and Ordinary Grace

Grace: A Child's Intimate Journey Through Cancer and Recovery

“If you know someone who has lost a child or lost anybody who is important to them and you’re afraid to mention them because you think you might make them sad by reminding them that they died, they didn’t forget they died. You’re not reminding them that they died. What you’re reminding them of is that you remember that they lived and that’s a great, great gift.” ~ Elizabeth Edwards

Two outstanding nominations have come in for the Big Heart Red Carpet Awards for September’s Childhood Cancer Awareness Month. What makes me very happy and full of hope for our future is that both nominees are my age. If you think of teenagers as self-centered, obnoxious, difficult beings who don’t give a darn about anyone but themselves, I have three excellent examples of teenage selflessness that will turn your opinion around.

The first nomination is for Lauren Clements and the non-profit she created called Ordinary Grace. (Yes, I do like that name!!!) Lauren has a huge heart for children with cancer, dedicating her time and efforts to make their lives better.

The second nomination is for Lindsay Kunik and Holly Walsh and their non-profit, Butterfly Kisses Care Baskets.

Ordinary Grace and Butterfly Kisses Care Baskets have similar missions. Lindsay describes their mission:

“Butterfly Kisses is a 501(c)(3) nonprofit organization that operates with several major goals. First, our goal is to lift the spirits of children fighting terminal illness and their families. As we saw firsthand with Ellie, cancer is a family disease. It does not only affect the child, who is diagnosed, but the parents, grandparents, siblings, friends and so on. We pride ourselves in making the entire family our focus. Secondly, our goal is to raise awareness for childhood cancer through involving as many people as possible. We encourage everyone to help, whether it is through a monetary donation, a donation of a toy, making cards for the children, or simply sharing with a friend about Butterfly Kisses. As two 16-year-olds who started this organization off of babysitting money alone, we believe that everyone can make a difference. It isn’t all about the monetary donations or the money we raise, but about the spirits that we touch, and the lives that we move. This is a big part of who we are and what we believe. It is our belief that there is no excuse for not getting involved. We appreciate $1 or $100, 1 card or 100 cards, 1 toy or 100 toys. Everyone has the ability to make a difference through Butterfly Kisses.”

With Lauren Clements at Braden's Run

This is your daily opportunity to be a childhood cancer advocate while only lifting your finger for a click!

The Andrew McDonough B+ Foundation

Have you voted today? Remember, for this contest we have to VOTE DAILY in order to win $50,000 for The Andrew McDonough B+ Foundation to help families of children with cancer nationwide. With 46 kids being diagnosed daily, many families need our help. Click “Vote for this Idea” at http://pep.si/oFeHcX.

SPREAD THE WORD! 

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Big Heart Red Carpet Awards

Grace: A Child's Intimate Journey Through Cancer And Recovery

Have you ever noticed (I’m not sure that it’s possible not to notice!) the headlines on the magazines available for purchase at our grocery store checkout stands? Right along with the latest headlines of the latest happenings of celebrities, there are captions commenting on how excellent it is that someone has lost weight, or how dreadful it is that someone has packed it on.

I have a hard time managing my brain when I look at those. I have a hard time managing my heart when I realize that we, as a society, value what our outer shells look like much more than we value the wholeness of our hearts. Is it just me, or is something sickening and wrong with this? I am not suggesting we discontinue bathing and grooming. I just think that The Grand Prize of Life cannot possibly lie in becoming The Thinnest, The Most Beautiful, or even The Most Famous.

I think the Grand Prize of Life lies much deeper… down in the deepest part of us.

Will you please help me look for winners of The First Annual Childhood Cancer Awareness Month Big Heart Red Carpet Awards?

I am looking for foundations, businesses, and individuals who have opened their hearts (wallets are appreciated, but certainly not necessary!) to fighting childhood cancer.

melinda@melindamarchiano.com

It’s way past time we start giving awards where they are truly deserved.

Know what’s funny…. if there were an award ceremony for this, no one would show up. These people already have their “prize.” They have helped children with cancer. They don’t need or want accolades or praise.

Those aren’t The Prize.

I leave you with —reminders of the reality of childhood cancer…

Andrew McDonough

Written by Andrew’s family…

 This B+ Hero is Andrew – the reason we fight so hard for a cure. Andrew was diagnosed with Leukemia (AML) on January 29, 2007, just 48 hours after playing 4 soccer games. His body went into septic shock and his heart stopped. Doctors said he wouldn’t live through the night, but he proved them wrong. He underwent nearly 50 surgical procedures, 4 strokes, multiple hemorrhages and a brain aneurysm that forced him to be airlifted to Jefferson Hospital in Philadelphia for emergency brain surgery. We were told he was the sickest child the hospital had ever treated. After 167 days in the hospital, Andrew passed away on July 14, 2007. www.caringbridge.org/visit/andrewmcdonough

 

46/7 is real... are you?

Written by Carla Mota…

… like always up all night fearing for my daughter… indescribable how it is to live fearing that your daughter might die… only someone who walks in my shoes will truly know the heartbreak I live with and for all of you who don’t, get on your knees and thank God NOW and beg him you never find out !!!

Update on Reefie... he's on his way to the U.S. today!

Written by Randy Hinton…

“If you force radiation ,steroids, and chemo on a condemned prisoner without his permission he can SUE THE STATE AND WIN. If you do it to a child it is called “Best medicine available”.

Praise the Lord for Remission

Written by Nikki Katz of Teddy Bear Cancer Foundation…

“Teddy Bear Cancer Foundation is currently working with a family whose three year old daughter is battling a Wilms Tumor. The family recently had to move out of their home into a small two bedroom apartment and have no furniture. If you or someone you know have any of the following items and wish to donate them please contact Nikki at 308-9941 or via e-mail.

Be sure to share this e-mail with friends, family and coworkers.

Queen bed, sheets, comforter, two pillows & pillow cases

Twin bunk bed, sheets, comforter, three pillows & pillow cases

One Twin Bed mattress

Sheets and comforter for a toddler bed

Small couch and chair

Dining room table with six chairs (not big)

TV

 DVD player

Standing lamp or two

Side Table for table lamp

Bookshelf

Thank you for your time and consideration.”

 

Reality check to all of America!

I will be awaiting your votes for the True and Most Deserving Winners in This Life.

 

 

 

 

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Dear Mr. or Ms. BIG NAME Fashion Designer

Grace: A Child's Intimate Journey Through Cancer and Recovery

I am sitting here in my soft, long-sleeved, pink “Team Max” shirt and ideas are bouncing around in my brainola like ping-pong balls. I love my Team Max shirt! I love not only its softness, but most of all that I am able to raise awareness of childhood cancer every time I wear it. I even have the opportunity to answer people when they ask, “Who is Max?” This is my very favorite part; I love having the chance to tell people about one of my biggest heroes. Max set a goal of raising $100,000 for St. Baldrick’s and pediatric cancer research, inspiring multitudes to give with his motto, “Two bucks, I mean it!” At only seven years old, Max knew all about giving and helping others. Last Thanksgiving Day, Max’s family learned the pain of saying good-bye to him. They are now carrying on Max’s mission to raise money for pediatric cancer research, and I have no doubt they will surpass Max’s goal.

Now for the “Bouncing Brainola” part…

I admit that I am “fashion challenged,” and have little knowledge of “what is hot.” Those name brands that have sky-high price tags just because they have a Hot Fashion Name puzzle me.

What if…

What if Team Max, Braden’s Hope for Childhood Cancer, B+Foundation (“It’s not a grade, it’s an attitude!”) Alexa’s Pediatric Cancer Foundation, Arms Wide Open, Isaiah Alonso Foundation, et al suddenly became popular high fashion? What if everyone suddenly needed fashion gear that not only covers their body and keeps them warm, but it fights childhood cancer every time it is purchased?

Maybe there is someone in the Hot Fashion Designer Name business who would like to give their name to help raise money for childhood cancer– just by lending their name, their brand.

Like I admitted before, I am fashion challenged; my knowledge in this area is slim to none. Please Mr. or Mrs. Fashion Designer with a BIG NAME, step forward into the light so I may see you and welcome you to the most noble of worlds you can live in… the world of helping children in great need.

Max, Mighty Leader and my Hero

 

 

 

 

 

 

 

 

TwitterLand People, please copy, tweet this, and vote to help raise money for Isaiah Alonso Foundation!

Pls RT & vote #kidsmatter 50k from #pepsirefresh http://t.co/P6M3zFg @The_IAF is #kickasscause@socialvest!

 

 

 

 

 

 

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Go Ahead… Jump In!

Grace: A Child's Intimate Journey Through Cancer and Recovery

Today is a gratitude day… as grateful as every day has been since my outstanding medical team helped rid my body of cancer. My three-year scans just came back “All Clear.” For Dr. Dan, Nurse Pam, Nanci, Robyn, Zippy, Jaynie, and everyone else at Cottage Hospital, I give you my love and thanks! I apologize for not being a “normal” patient and thank you for dealing so “gracefully” with my Melinda-ness!

Rather than let “Survivor’s Guilt” overtake me to the point where I cannot function to help others, I have found it necessary to tweak that thought and those feelings into action that will help. The hardest part of all for me is knowing of children who die each day from childhood cancer– knowing the suffering they have faced and the suffering of their families. There is no “Half-Way” point of caring about childhood cancer patients… either you jump right in and become submersed, or you stand on the sidelines with little understanding of what is truly going on.

Fair warning: Jumping in will give your heart the ride of its life.

Truth: Jumping in will bless your life with truly remarkable heroes!

Children's Healthcare of Atlanta making Children Happy and Health

I just read this news from PAC2 about Andrew McDonough B+ Foundation ! Does it get any better than this? Dancing to raise money to fight childhood cancer??????????? Northwestern University– thank you for jumping in! Happy Dance Time!

I will rewind life a bit for my next posts so that I can begin sharing more about the Hope Tour after we left New Orleans. 

Children's Healthcare of Atlanta

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Bigger, Wider, Deeper

Grace: A Child's Intimate Journey Through Cancer and Recovery

Hugo the HopeMobile returned to California one week ago. After three weeks, 3 days, 28 states, and well over 7,000 miles, it has taken me an entire week to process all that has happened so that I can place some of it into words. I feel that it will take my entire lifetime to fully grasp the meaning of this epic journey. I wish– I wish there were words big enough, wide enough and deep enough to describe to you how much this trip has impacted me. I am a different person than when I left home on June 17th.

Being able to visit so many places and having the opportunity to meet absolutely amazing people has made my heart bigger. I love how there is always room for more love in our hearts!!! The people I met taught me to have a wider view of how we need to give without holding back and how we need to express our love with passion and action. I love how when we set out to give our love away, it always comes back so much bigger than what we give.

I witnessed God’s mercy, grace, and His goodness. I felt His deep love. 

People ask me now if it was sad to visit the children who are very, very sick. It was just the opposite. As much as I hate what cancer does and as much as I hate the suffering it causes, meeting the children was a joy! They gave me so much more than I could ever give them; that is the plain truth.

At each stop, I thought of all of the children I know who have left this Earth way too soon because of cancer. As thoughts of these children who are no longer here filled my mind, my heart went immediately to all the people who suffer with this kind of hole in their hearts. I know there is nothing that can fill that hole.

Deep, deep love remains. This deep love has given birth to many forms of hope that help children with cancer. While we were in Philadelphia, Mom and I had the great pleasure and honor of meeting Joe and Ali McDonough from Andrew McDonough B+ Foundation. We loved meeting and talking with them! By combining their love for Andrew with their own enthusiasm and positive outlook, they have been able to raise money that is desperately needed for pediatric cancer research.

Joe and Ali McDonough from Andrew McDonough B+ Foundation

Now, I need, and want, to give a very special thanks to Joann, Bill, and Char from Alexa Nawrocki Pediatric Cancer Foundation. This foundation is named after Joann and Bill Nawrocki’s daughter, Alexa. Alexa battled cancer when she was two. In her loving memory, they began helping others.

Imagine what it must feel like to have someone give you food when your child is fighting for their life.

Imagine what it must feel like to have someone help you financially when it is time to bury your child.

Imagine how I felt when I met Joann for the very first time on our Hope Tour and she presented me with a check from Alexa’s Foundation to help toward our mission!

What means the most, is not the money, but they believe what I am doing is important—that it can make a difference. From the deepest part of my heart, I want to thank Joann, Bill, Char, and Alexa’s Foundation.

I finally got to meet Joann!!!

From this Bigger, Wider, Deeper Viewpoint, I wish that I could do everything to make a difference. I realize it’s going to take each one of us doing our part.

From this Bigger, Wider, Deeper Viewpoint, I can see the entire puzzle. I can see how we all need to be whatever part we can be of fighting childhood cancer.  Each piece is for the children,  and in its entirety, it is absolutely breathtaking. 

Stopping childhood cancer is about as beautiful as it gets.

 

 

 

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Creating Hope

Grace: A Child's Intimate Journey Through Cancer and Recovery

There are times I wish I could transport my People Shell through time and space so that I would be able to attend an important event… or be able to wrap my arms around someone I love.

I really could have used a People Shell Transport to bring me to Washington D.C. to attend CureSearch’s Advocacy Days and to witness the introduction of Kids v Cancer’s Creating Hope Act in the Senate by Bob Casey. (D – PA) This legislation means HOPE for many who suffer from “rare” diseases. Childhood cancer is classified as a “rare” disease— although 46 children in the United States are diagnosed with cancer each school day and 7 children die from cancer each day. Childhood cancer does not fall under the “rare” category in my personal encyclopedia. I look forward to the formal report from PAC2; Bob Piniewski (PAC2, dad to AJ,) Joe McDonough (B+ foundation, dad to Andrew,) Andy Mikulak (Max’s Ring of Fire, dad to Max,) thank you for your tireless commitment to helping children with cancer. Thank you Senator Bob Casey for your compassionate work– and thank you to all of the childhood cancer advocates who participated. (I will begin searching now for a Transport for next year!)

“Of the nearly one in 10 Americans with rare diseases, approximately two-thirds are children,” said Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD).  “Many of these rare pediatric diseases are very serious and treatments are desperately needed.  By expanding priority review vouchers to include pediatric rare diseases, this legislation would encourage the development of treatments for children with serious rare diseases.”

Now, two reasons why we need to act—now.

(Do we really need “reasons”… these are our dearly loved children fighting for their lives against a horrible disease!)

One of my dear Frovies (Friends I Love, and the “ie” is a hug at the end) on Twitter, Hara, asked me if I would please pray for Nick, passing along his Caringbridge site.

http://www.caringbridge.org/visit/francafamily/journal

My FB buddy, Steve, passed on this:

http://abclocal.go.com/wpvi/story?section=news%2Flocal&id=8031009

Yes, we need HOPE for children. Thank you to everyone working toward this goal. With cooperation, commitment, dedication and hard work, we will collectively reach the goal of curing childhood cancer.

Hero Taylor

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