ABOUT US
The Hemispherectomy Foundation, a 501(c)(3) non-profit organization, was founded to provide emotional, financial, and educational support to individuals and their families who have undergone, or will undergo, a hemispherectomy or similar brain surgery. We provide help which includes, but is not limited to: college scholarships, trade school scholarships, camp fees, life-aid equipment, travel expenses, and other aid as approved by the officers.
We are also dedicated to hemispherectomy education, awareness, fundraising, and research of the medical conditions causing intractable epilepsy that lead to surgery and the surgery itself. As the cause of these medical conditions are unknown, much research is needed.
Our Mission
- To Encourage and Support impacted families by connecting them with other families who have had a hemispherectomy or similar surgery
- To Work together with medical professionals to fund research into the cause of the diseases that lead to intractable epilepsy, hemispherectomy, and the surgery itself
- To Raise Money for camp fees, scholarships for trade schools and higher education as well as provide financial relief for struggling families
Our Formation
In the spring of 2008, little Jessie Hall, a six-year old kindergartener from Aledo, Texas, was diagnosed with Rasmussen's Encephalitis. A hemispherectomy, the removal of one-half (hemisphere) of her brain, was performed on June 11, 2008. This radical surgery was the only way to give her a chance at a normal life, free from seizures and free from this debilitating disease. Cris and Kristi Hall did not know what to do, nor with whom to speak. Having access to a referral list of fellow parents going through this same nightmare, would have meant the world to them.
There was no foundation or charity in place to seek organized support or the distribution of educational materials. They searched the internet during long, sleepless nights to learn about their daughter’s disease, Rasmussen’s Encephalitis and the most difficult brain surgery ever performed – a hemispherectomy. As incredible and amazing as this surgery is, even more unbelievable is that there had been no organization dedicated solely to helping these children.
Through chat rooms and their blog, The Hall’s met people who were going through the same turmoil as they. Cris and Kristi found great strength and support in speaking with these families, and friendships were formed. Having someone to walk with them on this painful journey, greatly touched Cris and Kristi’s heart. They wanted to do the same for others- but there had to be an easier way.
Cris and Kristi Hall, along with good friends John and Caren Jennings, realized the desperate need for a foundation that deals specifically with this surgery and the lingering after effects. At that time there was nothing in place to represent these children, and so The Hemispherectomy Foundation was born!
The Hemispherectomy Foundation was created for children who have undergone a hemispherectomy, and their families who are so greatly affected. Families come together, share experiences and lend support to those also suffering from the effects of this radical brain surgery.
Hard At Work
As word hit that The Hemispherectomy Foundation was being formed, people from all over the United States began contacting us to inquire how they might contribute to such an organization. As there had been no previously established charity to deal specifically with the hemispherectomy surgery and it's after effects, many people were excited to jump on board. With so many eager to work, our reach has expanded to help many more families who have been devastated by the illnesses which necessitate a hemispherectomy surgery.
We are constantly gathering names of children who are having this surgery, and those recovering. We send care packages and cards of encouragement to those who are in the hospital and recovering. As well, we are keeping track of others who are leading very productive and busy lives!
Currently, we are in the process of creating media to send every pediatric neurologist and neurosurgeon in the United States and Canada, to educate them on The Hemispherectomy Foundation , our mission and goals. With referrals of their patients, we will serve the hemi community more fully.
Many already working within The Hemispherectomy Foundation are having fundraisers and seeking corporate donations which will go to assist those families needing additional medical equipment, extended therapy and other needs their insurance is no longer covering.
