Thursday, October 30, 2008

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

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 .

God Bless,



OneofSix said...

Well done, my friend!! You said that perfectly! I couldn't have done it better myself. I am so proud to work alongside you.

Janet said...

Hello, You don't know me, but I've been following your blog since July, when I came across it looking for information for some very good friends of ours. Their 11year son was facing brain surgery to remove a cancerous tumor. He had Dr. Jalo from Johns Hopskins. He's doing well. Surgery was successful, radiation was hard and right now he's enjoying a 4 week break before starting chemo. They too are Christians and our church has rallied around them, during thise journey no one ever volunteers for. I just wanted to let you know you had someone up here in PA praying and cheering Jesse on who you have never met. I still check your blog from time to time... Go Jesse!
Prayers and cheers from PA!
Janet Sauder and family

Anonymous said...

Hi Jessie,

I saw you on TV when you went trick-or-treating. I hope you had lots of fun! You are walking so well now and I know your Mom and Dad are so proud of you! I will continue to pray for you.

Rita Tupin
Mineral Wells