Tag Archives: Joe Baber

Mesotheli-WHAT?

Mesothelioma is normally not a cancer one hears about in the childhood cancer community. That may be because, in most cases, because of the long latency period, it is not normally detected until the child becomes an adult.  Today, children in older schools may … Continue reading

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , | 2 Comments

Together

Our community is built of many similar, yet different and diverse organizations. Collectively, we are looking for a cure for childhood cancer. No one has actually been able to say with absolute certainty exactly how many organizations actually exist in … Continue reading

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , | Leave a comment

Lobbyist

Lobbyist… There, I said it! For me, it’s very difficult saying the “L” word. It never has felt good rolling around in my mouth, banging up against my molars and sliding out between my tight lips. I have always hated that … Continue reading

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , , , , , , , , , , , , , | 6 Comments

Rachel’s Place – Surviving Medulloblastoma

  Today, “Rachel’s Place” is with her family somewhere between Hope and Peace. She actually lives near Bel Air, Maryland, but her real place of comfort and security is anywhere she and her family are together. Each year during Brain … Continue reading

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , , , , , , , , , , | 2 Comments

The Funding Conundrum for Pediatric Cancer

My grandson, at 15 months of age, was diagnosed with high risk neuroblastoma. He is a survivor.  Although, he  endured an incredible six year long journey, this story is not about him,  his family, the changes in their lives, or … Continue reading

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , , , , , , , , , , | 3 Comments

Give me a big bottle of that stuff!

About this time last year, I was working on forming a reunion of people who had worked at Roses Stores, a southeastern chain of discount stores. Out of the blue, I walked back into Marion, VA, a wonderful small town … Continue reading

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , | Leave a comment

I’ll take second…

Lane Goodwin was known around the world for his struggle and the thumbs up attitude he displayed in his fight against cancer.  Unfortunately, Lane lost his battle in October of 2012.  When he died, he was only 13, and he … Continue reading

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , , , , | 3 Comments

Effective Public Speaking 101

Want to spread the word about how rare childhood cancer is?  Even if you are afraid to talk in front of a group of people, you can do this without giving a big speech!  This is how to give an … Continue reading

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , | 1 Comment

Tissue Donation – The last thing any parent wants to give

Progress, unfortunately is sometimes forged from the fires of pain mixed with strength, courage, passion and determination.  Nancy Goodman has such a story.  Nancy made a donation that no parent ever wants to give.   “My son, Jacob, was a beautiful, … Continue reading

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease | Tagged , , , , , , , , , , , , , , , , , , , | Leave a comment

Cancer Drug’s Valley of Death – Where is it, What is it?

To truly understand the problems with development of drugs specific to childhood cancer, and rare disease in general, examine the FDA’s Therapeutic Development Pipeline below.  The pipeline represents the normal development of an average drug.  The average successful drug will … Continue reading

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease | Tagged , , , , , , , , , | 3 Comments

Is Childhood Cancer Rare?

Generally speaking, when people talk about cancers, they like to quote the numbers.  Sadly, some point to the 36 kids a day diagnosed and 2,400 deaths per year and say they are small numbers compared to the adults diagnosed.  Some … Continue reading

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , , , , , , | Leave a comment

Searching for Gold

In the 1800’s, thousands flocked to the California hills for the great gold rush. Today, there’s a gold rush occurring in Peru where, each day, 40,000 or more people with pickaxes and crude hydraulic drills work the shaft mines of … Continue reading

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , , | 7 Comments