Hemispherectomy Foundation : What we do and how we finance it!

http://www.hemifoundation.org/

Someone asked me the other day, "Cris, what does The Hemispherectomy Foundation do?" For a minute, I was a bit offended, thinking how could they NOT know what we do. Everyone knows what we do!

But then I thought about it, and realized that just because I've been immersed in the foundation for months, and so have everyone else who is part of the foundation, there are many people out there that don't know what The Hemispherectomy Foundation is all about. So here is the breakdown, starting with our Mission.

"The Hemispherectomy Foundation is dedicated to children and their families who have undergone, or who are considering hemispherectomy brain surgery." Ours is a mission of HOPE. Hope that the remaining brain hemisphere can help these children and families to live life to their fullest potential.

This mission is accomplished through many things, but at the root is Support. We have a hospital gift program called "Hemi Hugs", where every child in the hospital receives a care package with age-appropriate gifts. This is as much for the family as it is for the child. We want to show the child and the parents that someone understands the serious nature of this surgery and the long-term consequences. We want to show that we care.

We offer support, by helping families connect with other families who are going through or who have been through this life-changing experience.

We offer college scholarships to kids who have overcome adversity and who are attending college, and in 2009 we will offer Camp scholarships to those who may benefit from a camp setting geared toward the special needs of our children.

We offer educational support from our Foundation Teacher. Our families can ask question to and advocate and teacher who has worked with school systems and special needs kids, and get an honest response that has their best interest in mind.

We also do many things that are not part of our official mission such as holiday cards, birthday cards, and holiday gifts. We talk to families who are looking for answers, and help them find those answers. We'll try anything to help our families. We have one director who is helping a family from Bosnia, find a hospital in Germany that can help them out. Private emails and phone calls are a weekly event between our directors and families.

We have directors on the East Coast, West Coast, the Midwest, and the South. None are paid or ever will be paid.

The Hemispherectomy Foundation operates on a zero ($0.00) expense budget. That means that we have NO PAID STAFF. Our Attorney donated his services, our CPA donated his services, our Accountant, the same, teacher the same. Even our office printing was donated. Every person from our CEO to our Specialty Directors to our Angel Voluteers work for $0.00 . They work out of sincere compassion and for the love of our children and families. No one is paid and no one ever will be. It's in our by-laws. All the financial support goes to the kids and their families. That's not our goal. THAT'S THE RULE !

Even our Hemi Hug hospital care packages and holiday gifts are all "GIFTS-IN-KIND" . The postage is even donated. These are not taken out of foundation funds.

The foundation funds are reserved for things like College Scholarships, Camps, Aid, and in 2009 some will go toward the Hemispherectomy Reunion in Baltimore. In years to come, this list will expand and we hope to ensure that no need goes unmet in our hemispherectomy community.

I know that some of you are donors, and I want you to rest assured. As the CFO of The Hemispherectomy Foundation, these funds will be carefully guarded and not squandered as so many non-profits have done. These funds will go to support our mission and no where else!

I sound like a politician...ugh, that's the last thing that I want, so I'll stop.

If anyone every has any questions about The Hemispherectomy Foundation, and our mission or how we operate, don't hesitate to email me at cris@hemifoundation.org .

God Bless,

Cris

For the Glory of God!

http://www.hemifoundation.org/

Time has a way of pushing things to the back of your mind. Memories become foggier, and are replaced with more recent happenings. It's nice to lose the bad memories, but there are others that we try desperately to hold onto forever. I really have no desire, whatsoever, to remember how I felt when Jessie gave me a high-five before she walked down the hall with Kristi and jumped up on the operating table with a smile on her face...but that memory won't seem to go away. It never will.

On the other hand, the memory of the amazing things that God did with communities and people all over the world, is beginning to fade. That doesn't seem quite fair. Yet, maybe there is a reason for this. A constant reminder to consciously remember these wonderful things. The amazing things that God did with communities and people is a memory that I refuse to let go with time. I don't ever want to forget the Amazing things that were done by Him and for Him in Jessie's amazing story. So, I thought that I would spend some time today, reminding myself of how things were and how things should be.

Our struggles over the past year and a half have brought back a relationship with Jesus that I desperately needed, and you can read that journey if you happen to have a couple of hours to start at the bottom of this blog. I have been very honest about that. My eyes were opened when I saw the amazing power that He has over communities, people, and all things in the world. There is NO other explaination. Kristi and I used to sit back and marvel at what was going on as people from all over the world came to support Jessie and our family. "Coincidences" happened on a daily basis that could not possibly have been coincidences....there were too many. They were driven by a higher power. No one will ever be able to convince me otherwise.

When we started The Hemispherectomy Foundation, people from all over the US and world were delivered to us as we needed them, so that this foundation would work and prosper. It's as if the right people came at the right time for the right purpose.

These are memories that I don't ever want to see lost, because these are the exact ones that rejuvenate my faith on a daily basis. They remind me that I have nothing and that all things that I do, should be done for the glory of God and that when I start doing them for myself or other reasons, I am missing out.

I want to do ALL things for the glory of God. Period. However, I will be the first to admit that I fail miserably at that goal on a daily basis. It seems that as the week goes on, I focus more on me and less on Him. Maybe that is why I'm writing this today...as a reminder to myself.

The bottom line, is that I see a lot of really good memories fading, and that is OK, but I cannot forget Who was behind all the great things that have happened in the last year and a half. It was too BIG. It was the BIGGEST thing that I have seen happen in my life and I don't ever want to forget that.

Have a blessed day!

Cris

A Halloween Treat for Hemispherectomy Kids All over the US and World !

http://www.hemifoundation.org/

While most of us were taking care of our day-to-day business, a very special group of angels from The Hemispherectomy Foundation were busily trying to make the day special for Hemispherectomy children all over the United States and even in other countries.

Four angels, Caren Jennings, Traci Cottrell, Lindy Shelton, and Jen Steward created Halloween treat bags and toys for all children who are part of The Hemispherectomy Foundation. These Halloween Hemi Hugs were sent out in mass earlier this week to the delight of parents and children who have undergone the same surgery as Jessie.

Many were overwhelmed, as they are not used to being treated the Aledo way. Caren, Traci, Lindy and Jen are working on that one package at a time.

Below is a picture of one of our kids who received a Halloween Hug. One of the prizes in the bag was this nifty pair of glasses, which he is modeling below.

This is Aiden Waters and is the son of Rachel Waters, The Hemispherectomy Foundation's Specialty Director - Sturge Weber Syndrome. They are on the West Coast. Aiden recently had his surgery and is recovering well. Aiden's story is at http://www.aidenslife.com/ .

God Bless,

Cris

http://www.hemifoundation.org/

A New Image and Logo for The Hemispherectomy Foundation

http://www.hemifoundation.org

Thanks to Jay Stringer, Pressman Printing, and their artist Teresa Miller for creating The Hemispherectomy Foundation's new image. This is the way our Non-Profit Corporation will be branded on all things in the future. We are so proud of our new look and how it totally reflects our Goal to give HOPE to families as they struggle with hemispherectomy surgery.

If you every need printing of any type done, please go see Jay at PRESSMAN PRINTING, INC. 8308 Clifford Street - Fort Worth, Texas 76108

817/246-2460 - Toll Free 1-888/246-8877 - Fax 817/246-2467

They are extremely professional and do top-notch work!!!

http://www.hemifoundation.org

An AMAZING Creative Memory of Jessie's Make-A-Wish Trip

http://www.hemifoundation.org/

We got an email from Debbie Fitzpatrick about a week or so before we left for Baltimore. We had never met her, nor had we ever even heard of her. She told us that she wanted to make a scrap book of Jessie's Make-A-Wish trip for us.

To be honest, getting pictures together for her was the last thing that we wanted to do. Jessie's surgery was coming quickly and we had so much to plan. Well, Kristi decided that we would never get around to documenting the trip, so we quickly put pictures together and sent them to Debbie. The next four months was a whirlwind. We forgot about Mrs. Fitzpatrick and the pictures.

So a few days ago, we get a call from Debbie and she says that she has the scrapbook ready for us and would like to come by and give it to us. Wow!!! We had totally forgotten.

So Debbie and her husband came by on Sunday to deliver the scrapbook. Well, scrapbook doesn't really do it justice. These were works of ART !!!

Debbie created an amazing 2-volume set of wonderfully crafted pages documenting Jessie's Make-A-Wish trip like I have never seen. OK, I'm just a dumb guy, but these books were INCREDIBLE. We were such bad hosts, because we couldn't keep from looking at them while they were in our house.

I don't know much about Scrap booking, but I have watched Kristi and I have done a page or two myself. Please don't spread that around to my guy friends. I know how much work these pages took, not to mention the cost of Creative Memories gear. There were two full volume scrap books.

Each page was custom made to match the pictures. Debbie would take a theme from one picture and customize the who page around that theme, using intricate cut-outs and backgrounds, to three-dimensional widgets to complement the entire presentation.

Oh my, I'm starting to sound like a girl....need to go belch loudly or kill some game.

Enough said, the books are amazing, and if you are ever over at the house, please ask to see them. We are so proud of them and thankful for what Debbie did for us. Her time, expense, and compassion cannot be compensated.

Debbie, If you are reading this, Thank You from the bottom of our hearts.

Here is a picture of Debbie and her family.

Thanks again Debbie.

Cris and Kristi Hall

http://www.hemifoundation.org/