The New and Improved Hemispherectomy Foundation Website
Believe it or not, it has only been a few short months since the Hemispherectomy Foundation became a reality. We’re already on our 3rd iteration of the website, and this one is the best so far. Thanks to the generosity and talents of our Director on the West Coast, Rachel Waters, we have a new look that projects our message of HOPE to those that we feel privileged and blessed to serve. Each month, we will get better, bigger, and stronger, and like a butterfly, we will transform and emerge with an organization that provides amazing support for our families and their children.
If you haven’t seen the website lately, go take a look and let us know what you think. Suggestions can be sent to Rachel@HemiFoundation.org
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Meet the Hemispherectomy Foundation Team
Come meet the Hemispherectomy Foundation Team! Hemispherectomy Angels is a name that someone suggested many months ago, and I think that this group of volunteers have been sent from heaven. They have compassionate hearts and a passion and dedication to the Hemispherectomy Foundation like nothing that I have ever seen.
From our Officers to our Directors, Gift Coordinators to our Accountant, each volunteer is dedicated to one thing: The Children and Families who are facing, or who have faced Hemispherectomy surgery. They work tirelessly for the support of new families and veteran families alike. They will do what they have to do, to get the job done!
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Halloween Tricks and Treats!
Christmas is just around the corner, so you never know what the angels will be putting together this holiday season.
Caren, Traci, Lindy and Jen and the entire foundation hope that everyone enjoyed their Halloween Hemi Hug.
We apologize if anyone was left out. If you want your child to be included in future Hemi Hugs, please send in a directory request HERE.
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The Yahoo Support Group
The Yahoo Support Group was started many years ago by some pioneering parents who saw the need for a forum where parents could get together and talk about all things to do with hemispherectomy surgery, the agonizing decisions leading up to surgery, and the lifelong issues after surgery.
This forum is one of the first places that we send parents who are looking for emotional support, answers, or just a place to vent. This is also the first place that we go as parents ourselves!
This is a wonderful community of caring parents. Usually someone has been through the same thing that you are going through, and their candid, caring, and supportive advice is invaluable to the new kid on the block. In addition, many parents have been around for years and work together to deal with issues facing older children, teen-age kids, and even those kids who aren’t kids anymore.
So come introduce yourself, or just hang out and read. If you are a first time poster, your post may take a few days, as the moderator must approve all first posters. After that, you are free to post and participate in discussions. Check it out, it is an invaluable resource.
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The Hemispherectomy Foundation Mission
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 is the reason for the butterfly logo, with one wing smaller than the other. The butterfly can still fly and be a thing of beauty with one wing that isn’t so perfect. With only one hemisphere, our children are also a thing of beauty and can fly free. Seizure free, they and their parents have “Hope in One Hemisphere”.
Our 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 them 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 we offer Camp scholarships to those who may benefit from a camp setting geared toward the special needs of our children. We will fund research, and help the community in ways that have not been seen before or even imagined.
We offer educational support from our Foundation Teacher, and Therapy Support from our Foundation Therapists. Our families can ask questions directly to a teacher and/or therapist who has worked with hemi kids, and get an honest response that has their best interest in mind. Imagine the time this will save you in getting an appointment or getting someone to call you back on the phone. This is a free service to our families.
All Hemispherectomy volunteers work Pro Bono. No one is paid, so that all donations go to help the children and their families. Even the Hemi Hugs and postage are donated as gifts-in-kind. The Administration costs are zero. That’s not the goal. That’s the rule!
There is so much more to come, so keep checking back on the website, and keep watching your inbox for the next edition of BRAIN MATTERS.
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Hemi Foundation Christmas Cards
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The Hemispherectomy Reunion
Please mark your calendars for the next Hemispherectomy Conference and Family Reunion, scheduled for July 9-12, 2009, at the Holiday Inn Baltimore-Washington Airport in Baltimore, Maryland. Learn More.
In This Edition
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Discussion Groups
Meet other Parents Online for Discussion and Support
A group of parents supporting each other and discussing topics surrounding hemispherectomy.
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Be Included on The Hemispherectomy Directory
Don’t miss out on any important Hemi News or Events.
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This is our president, Kristi Hall. Like Kristi, each volunteer believes that it is a blessing and a privilege to serve the Hemispherectomy Community. None of them are paid, yet each one has made this foundation a priority in their life. It is a priority to serve people that they may have never met, yet share a unique bond.
If you feel that you would like to be involved as well, please let us know, and we will find a place for you. Or if you already know how you would like to help, let us know that as well.
The Hemispherectomy Foundation Newsletter
Brain Matters
Fall 2008 Edition
Published 11/26/2008
While most of us were taking care of our day-to-day business, in the normal fast-paced, hectic way in which most of us live, 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 children who have undergone hemispherectomy, and the parents who protect them.
Many were overwhelmed and overjoyed to receive such a thoughtful treat. From someone whom they had never met. They received a decorated bag with toy glasses, and candy treats, and most importantly a package in the mail just for THEM. What kid doesn’t love that!!
Do you remember what it was like when you were a kid to get a package in the mail? Addressed to you and for no one else? These small Hemi Hugs are just a small part of what our organization is about. There are so many other BIG things just waiting around the corner. More scholarships, research grants, camp tuitions, rehab equipment. You name it, and if our budget allows for it, and it helps the Hemi Community. We’re there!
The 2008 Christmas Cards are hot off the presses. We really appreciate those of you who submitted art work for the 2008 cards.
These are a wonderful preservation of our children’s art work, and make great Christmas cards or holiday cards for those that you love. Each Card was created by one of our beloved Hemi Children to help brighten the season.
Be sure to order yours today at the Hemispherectomy Foundation website.
