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Epilepsy Foundation of Colorado

Support the Epilepsy Foundation of Colorado (EFCO) to help nearly 60,000 Coloradans with epilepsy receive critical services that help overcome the many challenges created by epilepsy.

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Beyond Medication

Class

Diseases, Disorders & Medical Disciplines 

Beneficiaries

Disabled
People/Families of People with Health Conditions
People/Families with of People with Developmental Disabilities
People/Families with of People with Disabilities
People/Families with of People with Physical Disabilities

Description

Most people who have epilepsy take medications to prevent seizures. Sometimes, those medications are ineffective or cause negative side effects. Patients have multiple treatment options to explore with their doctors. Beyond Medication educational seminars are held approximately 4 times per year at various locations throughout the state, bringing information directly to the communities that need it most. Connect with local peers, health care providers and health service professionals to learn more about what opportunities are available beyond medication.

In 2018 we held four seminars which averaged 20 people per session in Cheyenne, Denver, Montrose, and Pueblo

Photos

Evidence of Program's Success

Beyond Medication seminars maintained its reach along the Front Range of Colorado, reaching communities in Pueblo, Denver, Cheyenne, Fort Collins, and Grand Junction.

"Beyond Medication events offer more than education and resources for those impacted by epilepsy. From a staff perspective, I can see the need for having a space safe for people in this community to gather. Our clients need to know they are not alone, and they need support and resources to help them thrive. Beyond Medication is a great place to start when you feel like epilepsy is stealing too much from your daily life."

We C.A.R.E. - (Caring Adults Redefining Epilepsy)

Class

Diseases, Disorders & Medical Disciplines 

Beneficiaries

Disabled
People/Families of People with Health Conditions
People/Families with of People with Developmental Disabilities
People/Families with of People with Disabilities
People/Families with of People with Physical Disabilities

Description

We C.A.R.E. volunteers bring the Epilepsy Foundation of Colorado's services directly into the communities where we live and work. The group does this through a network of action: creating awareness, fundraising, implementing activities and socializing. These powerful networks build lasting relationships in our neighborhoods because We C.A.R.E. is everywhere we need to be.

Photos

Evidence of Program's Success

We C.A.R.E. hosted a Purple Pumpkin Party, a community potluck, as well as several social outings throughout the year. The ultimate goal of weC.A.R.E. is to create a strong network of individuals committed to raising epilepsy awareness and strengthening ties to the community. Other social outings are generally meeting at restaurants or bars in the community to connect and talk about epilepsy/EFCO.

Mental Health Program

Class

Diseases, Disorders & Medical Disciplines 

Beneficiaries

Adults

Description

EFCO offers a comprehensive Mental Health Program that includes many components to care for those with epilepsy who may require additional mental health support.

The MH Program includes:
1. Information and Referral which is answering inquiries from clients/families and can range in the needs they have - from just needing a simple resource to possibly experiencing some mental illness, crisis, distress and needing on-going professional support.
2. Preferred Provider Network is a network of mental health therapists who are trained in epilepsy and
PNES and comorbidities that affect those with epilepsy. These clinicians are our main referral network
when we have clients who are in need of MH intervention. EFCO creates and implements training modules for therapists in the Network to better manage individuals with epilepsy
3 Project UPLIFT is a skill-building group which utilizes CBT skills and Mindfulness skills to help clients experiencing depression/anxiety/isolation. It serves approximately 15-20 adults annually, in a weekly 8 session series that meets by phone for 1 hour at a time. Transportation is not a concern for participants, as UPLIFT is delivered by phone and online. It also lowers the anxiety of having a seizure in public. The confidential nature of UPLIFT makes it easy to seek support for depression without fear.
4 Peer-to-Peer Program which is a mentor program pairing those with epilepsy or family members of those with epilepsy with someone 1:1.
5 Case management providing on-going support to those who have some higher, on-going needs. This program runs in conjunction with local hospitals and clinics in order to bring our MH resources to those in need. This includes our MH staff visiting clinics/hospitals to provide resources in various ways to clients in need.

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Evidence of Program's Success

Evidence of the program's current success is indicated in Emory University's ongoing studies of Project UPLIFT. EFCO has served 10 clients in the PPN referral network over the course of this year and 10-15 UPLIFT clients.

Rock 'N Rally Summer Camp for Kids

Class

Diseases, Disorders & Medical Disciplines 

Beneficiaries

Children Only (5 - 14 years)

Description

Rock 'N Rally is a summer camp for kids ages 8-12 at Cal-Wood Education Center in Jamestown, CO. This overnight weekend camp provides a child with seizures the opportunity to build confidence, make new friends, have fun in the great outdoors and learn more about epilepsy.

We strive to foster a "normal" camp experience for our campers because they are oftentimes deprived of this basic right. Rather than ignoring the diagnosis, we let our campers embrace it as much as they are comfortable with at camp. We offer a session called, 'Ask the Doc' where they can candidly ask doctors questions about their epilepsy journey. They might be uncomfortable asking certain questions with their parents present at doctor's visits.

At Rock n' Rally, kids can focus on fun activities including arts and crafts, treasure hunts, the climbing wall, team building games, and much more. During this sense of normalcy, they are able to develop relationships with their peers and relate to one another on a level that they can't obtain at another summer camp. They won't have campers and counselors with epilepsy cheering them up the climbing wall anywhere else. These relationships create a therapeutic undertone that improves camper's self-esteem and diminishes feelings of isolation. We are letting kids be kids, one epilepsy camp at a time.

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Evidence of Program's Success

Program success is evident when (1) the medical community serving children with epilepsy refer their patients to the camp; (2) parent and youth surveys provide positive feedback; (3) word-of-mouth in our epilepsy community results in greater participation and (4) campers who grow up and become young adults become volunteers or supporters of the organization. We had approximately 50 kids attend camp this summer. Overall feedback for Rock n' Rally has been excellent.

Circle of Friends Support Groups

Class

Diseases, Disorders & Medical Disciplines 

Beneficiaries

Adults
Aging/Elderly/Senior Citizens
Children and Youth (infants - 19 years.)
Families

Description

Through a dedicated and trained group of volunteers, EFCO offers Circle of Friends support groups throughout the state. These groups provide educational and emotional support in a positive environment for people living with epilepsy and their families. It's a safe place to make friends, share advice and resources, and create a network of support. In addition, Therapeutic Support Groups offer more structured plans, implemented by licensed therapists to help adults deal with depression and other significant challenges as a result of epilepsy.

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Evidence of Program's Success

EFCO offers 10-12 in person support groups around Colorado. There are additional online support groups available for those who cannot travel or do not have a local group nearby.

Marie began a support group in a northwest rural community after receiving in-depth training and ongoing support from EFCO staff. The first meeting attracted two adults and three parents, all directly impacted by epilepsy. This Circle of Friends has now grown to 16 inspiring individuals. The connections and social interaction extends well beyond the monthly gatherings, including friends offering rides to those who cannot drive, introductions to new social experiences (such as the local church club) and "Hello, how are you?" greetings in the grocery store.

Education and Training

Class

Diseases, Disorders & Medical Disciplines 

Beneficiaries

Adults
Aging/Elderly/Senior Citizens
Crime/Abuse Victims
Families
General Public

Description

We offer extensive community education programs across the state. Epilepsy education and seizure first aid training occur through seminars and presentations to educators, nurses, students of all ages, law enforcement, corrections officers and employers and employees. Our signature programs include "Managing Students with Seizures" for school nurses, first responder training for law enforcement and other front-line responders to a seizure emergency, and Epilepsy 101 that can educate anyone in basic seizure first aid. We also do employer trainings that are useful if a place of business has an employee with seizures.

Photos

Evidence of Program's Success

A large police department in the Denver metro area responded with what was deemed by the courts as unnecessary roughness when a 911 call was made regarding a man having a seizure (with violent tendencies).

Following the court's decision, the Foundation was contacted to provide epilepsy education and seizure first aid training to the police department. Trained volunteers provided mandatory group training sessions for more than 700 police officers.

The Foundation has trained approximately 32 law enforcement agencies throughout Colorado.

Our Education and Training program provided training for almost 1,400 people between 2017 and 2018, and provide informational folders to 100 new school nurses in the state of Colorado each year.

Jason Fleishman Summer Camp

Class

Diseases, Disorders & Medical Disciplines 

Beneficiaries

Children and Youth (infants - 19 years)
Disabled, General or Disability unspecified
Families

Description

The Jason Fleishman Summer Camp provides a caring, safe environment for youth to build confidence, self-esteem and friendships, while learning real-life tools for living with epilepsy. For many parents of children with seizures, the idea of sending a child to camp is frightening. However, camper and parent testimonials reveal the benefit of camp and the often life-changing experience for a child living with epilepsy.

Camp allows a child with seizures to focus on what they CAN do with the support and encouragement of caring peers and camp staff. This is often a child's first time away from home, and it's the goal of the Foundation to make it a safe and positive experience to foster a child's growth.

Located at the YMCA of the Rockies in beautiful Estes Park, this five-day overnight camp for youth ages 13-17 living with epilepsy provides an opportunity to participate in fun and exciting activities like rock climbing, zip line, arts and crafts, horseback riding and more. To ensure the safety of campers, we have a licensed medical team and experienced counselors onsite at all times.

Photos

Evidence of Program's Success

Jacob started attending camp at age 13. He was reluctant to attend and ashamed of his diagnosis. He'd been retreating from school and friends. The week-long camp experience helped Jacob see he was not alone. He interacted with seasoned counselors, doctors and other teens with epilepsy. Jacob shared, "Epilepsy is not all of me, only a part of me. Camp helped me discover that my epilepsy was not the only thing that defined who I was or who I could become." Jacob continued to attend camp every summer and is now a camp counselor, helping other youth to fulfill their greatest potential. Additional positive camper feedback we received includes " I liked
camp because I can do stuff by myself" and "We always have a bunch of fun and you
can meet people that have the same condition".

Youth Council

Class

Diseases, Disorders & Medical Disciplines 

Beneficiaries

Youth/Adolescents only (14 - 19 years)

Description

The Youth Council provides teens ages 15-22 with an opportunity to become leaders in the epilepsy community as volunteers, spokespeople and legislative advocates. Kids Speak Up! is an amazing opportunity for youth ages 7-16 to travel to Washington, D.C. with their families and meet with legislators on Capitol Hill to share their personal stories and help to raise awareness.

Youth council leads the newly diagnosed backpack program which assembles and distributes backpacks full of important information for those who are recently diagnosed with epilepsy. We partner with Children's Hospital (all locations) to bring the backpacks to those in need. We have distributed 500 backpacks this year and have distributed approximately 2100 since 2012.

Photos

Evidence of Program's Success

Carol joined Youth Council as a newly diagnosed 16-year-old with epilepsy. She quickly rose to a leadership role, guiding the council's involvement in philanthropic opportunities, advocating through government relations channels and actively talking about epilepsy in her everyday encounters. Carol has touched hundreds of lives as a Youth Council role model.

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