Wednesday, December 24, 2014

Emily Koesters  age 11
We would like to thank all of you who have welcomed Joe and I taking over the reigns for the Little Giants Foundation, and wanted to share how much we have appreciated the donations that have come in so far!  Since the 1st Annual LGF 5K Trail/Run-Walk in October,  we have been busy planning for 2015 and working on behind the scenes things.  Merry Christmas and we look forward to the New Year with you!
BELIEVE-
The Koesters

Monday, November 24, 2014

Tears...

Juan of Spain Rest in Peace

We are sad to report the passing of another Little Giant today!

The above link gives a bit of insight into his story. ( there is a tab to translate in the article)

We have been following and messaging with the family for a little over a year.  So sad.

BELIEVE

Friday, October 17, 2014

Event Photos!

LGF Facebook Page with Event Photos
Check out the super photos from the 1st Annual Little Giants 5K Trail Run/Walk on the LGF Facebook page link!

Tuesday, October 14, 2014

The Race May Be Over, But the Fight is Still On!

Thank you to everyone who attended, volunteered, donated, sponsored and supported The 1st Annual Little Giants 5K Trail Run/Walk!  It was a beautiful October day, much fun was had by all, and we raised a little over $3,000.00!  

Remember to follow us here on the blog, and on our Facebook page: The Little Giants Foundation as we continue to bring awareness, educate and raise funds for our Little Giants.

Friday, October 10, 2014

ONE MORE DAY!

Get registered now!

I will be sitting here waiting to see ya'll tomorrow at True Buddy Farms- Home of Luv-A Lamb for the 1st Annual Little Giants 5K Trail Run/Walk!- Believe- Emily Koesters


Thursday, October 9, 2014

Registration Link for LGF 5K Trail Run
Hey, ya'll, did ya hear the weather is gonna be 60 degrees and sunny for my big sissy's race on Saturday, Oct. 11 @ 1PM?  Hope to see ya'll there!  Love- Taylor-Jo

Monday, October 6, 2014

1st Annual Little Giant 5K Trail Run Registration Link


A special note: Destiny Sanak, pictured below. was called to heaven yesterday and will be laid to rest on Wednesday.  Please say a special prayer for her family and friends down in Arkansas.  What an amazing life this 15 year old had that was taken far too soon because of Schimke Immuno-osseous Dysplasia.  Yet another reason to join our fight because together we can do something extraordinary!

Wednesday, October 1, 2014

Dwarfism Awareness Month!

October is Dwarfism Awareness Month! Help Emily Koesters and The Little Giants Foundation spread the word by attending the 1st Annual Little Giants Foundation 5K Trail Run/Walk Saturday, Oct 11, 2014!
https://secure.getmeregistered.com/get_information.php?event_id=11706 — 

Wednesday, September 17, 2014

Time is running out...

It is with great sadness that I report today the loss of yet another SIOD- Schimk Immuno-osseous Dysplasia child.  Piper Smith was a beautiful young girl, who like Emily was put through more than any child should have to bear.  I spoke with Piper's mother, Pam several times via telephone and countless times on Facebook.  Piper and Emily were very close in age and this haunts me to my very soul- once again- as all I can wonder despite all my being to BELIEVE- is when will it be Emily's turn?  We have surpassed ALL odds with her and time will run out.  Please- in honor of Piper and the other children lost to SIOD- spread the word about LGF and SIOD and donate what you can to help us raise the desperately needed $3.5 million for research to obtain a medicine to help these children.  I become more and more afraid that Emily will not be here to see that goal obtained.  She has to be.  In my next breath- I BELIEVE- I have to!

Thursday, September 11, 2014

https://secure.getmeregistered.com/get_information.php?event_id=11706

Thursday, August 7, 2014

Extra! Extra! Read All About It!




IMGP1376-2.jpgLGF[1].jpg



Meet Emily – Our Little Giant

Emily was diagnosed with Schimke Immuno-osseous Dysplasia—a complicated medical term for one of the rarest forms of Dwarfism. Unlike most dwarfs you’ve seen, Emily is proportioned and stands 41 inches tall. Her condition is so rare that Emily is only one of six others in the United States who have been diagnosed with Schimke, and one of only 45 across the world. It’s believed that many more children may have Schimke but the journey to a diagnosis can take years and most lose their battle from the symptoms of kidney failure or stroke before they’ve been accurately
diagnosed.Doctors in British Columbia, who have worked on their own time, money and resources, have cloned another patient’s genes and believe that Ataluren (originally developed for those with Muscular Dystrophy) could bypass the gene mutation for children with Schimke. This is a shovel-ready project that offers extraordinary promise — Little Giants Foundation (www.littlegiantsfoundation.org ) was formed to share this advancement with others and to assist with the $3 million dollars needed to complete the research and testing.

Join our fight! Together, we can do something extraordinary.

Our Main Goals

To become a voice for those diagnosed with rare forms of Dwarfisms

• To support research, studies and experimental testing that offer life-saving hope

• To connect those who are affected with rare forms of Dwarfisms with each other
 and to provide vital information and news that can strengthen our fight

• To enhance awareness of rare Dwarfism among the public, private, government,
  and health insurance parties

• To educate the medical community about Schimke and other rare forms of
 Dwarfisms to reduce the incident of misdiagnosis

Little Giants Foundation is a component fund of Gretna Community Foundation an Affiliated Fund of the Midlands Community Foundation, a  Nebraska 501(c)(3) Non Profit Corporation, whose tax ID is 51-0191738.