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2019 Top-Rated Nonprofit

Sofies Journey Inc/Epilepsy Awareness Day at Disneyland

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Nonprofit Overview

Causes: Brain Disorders, Brain Disorders Research, Epilepsy, Health

Mission: In an effort to address the unmet needs for increased education for people with epilepsy and their families, we have created the Epilepsy Awareness & Education Expo & Epilepsy Awareness Day at Disneyland. Our goal as Sofie's Journey is to help educate as many people as possible to learn to advocate and find the cure they are looking for. We work with the finest professionals, from Epileptologists, to non profits and everything in between. We are the one stop shop for all things Epilepsy!

Results: 7th annual Epilepsy Awareness & Education Expo this year! We started with 972 guests and we expect 5000 this year! We have changed peoples lives so many times. 1 in 26 have Epilepsy. Do you know 26 people? Do the math!! Please share!!!!

Target demographics: anyone and everyone with seizures/epilepsy or a loved one that you care about!

Direct beneficiaries per year: many families find answers, get better care and support

Geographic areas served: home base is Irvine, Ca but we have support across the US, Canada, UK, Australia & beyond

Programs: The ONLY event of its kind. FREE two day Expo about everything and anything seizure related!

Community Stories

26 Stories from Volunteers, Donors & Supporters

2 Chanda H.1

Client Served

Rating: 5

Amazing work by awesome people!! So much information and resources available all in one place.

1

General Member of the Public

Rating: 5

This event and non-profit are truly amazing. The amount of information, small group lectures from the top doctors and opportunities to connect with others in this community are like nothing you can experience anywhere else. We had been struggling for information and direction for 11 months when we were introduced to this event. In one day, I learned more than I had spending hours every day for months. We were connected to one of the leading hospitals/programs and there has been a marked difference in our son’s progress/seizures. The access information on products and cutting edge technology at the booths is also incredible. The Disneyland day, for us, is one of the most heartwarming experiences. To walk through the park and see so many people in the same shirts as you, truly makes you feel like you are not alone! The people who run and started this are some of the most genuine people you can meet. I can’t recommend them enough! They are life changers!

2 JessicaCreedon

General Member of the Public

Rating: 5

I don't know where to begin in expressing how much the Epilepsy Awareness Day at Disneyland and the Levy family mean to us. We were lucky enough to attend in 2017. The people we met and the things we learned truly changed our life and the way we think about epilepsy. I cannot imagine the tremendous amount of work that goes into making such an amazing event. We will return some day!

1 Anita M.2

Client Served

Rating: 5

The conference always gives me renewed hope and I leave feeling fueled up again for the seizure/neurological challenges ahead. A wonderful benefit is getting to enjoy a wonderful playground like Disneyland, a break from the everyday. It has become our go to vacation each year, the amazing and well done conference with the Happiest Place on Earth.

1

Client Served

Rating: 5

Two days to listen, interact and have your questions answered by top notch professionals in area of Epilepsy/neurology. Invaluable and free - I would pay if needed! Brad (Sophie's Dad) has been supportive and always willing to help. Love this very worthy charity.

1 Katie O'Brien B.

General Member of the Public

Rating: 5

Sofia’s Journey Inc organizes a two-day very large expo bringing awareness to Epilepsy. Last year my husband and I decided to go attend the expo in hopes we could learn something new after battling epilepsy for over 20 years. We met amazing doctors and in fact we transferred my husband’s care to UCI after meeting the doctors. This expo is life changing and Sofies Journey is literally changing the lives of so many people by hosting this amazing event! We will forever be appreciative of this amazing organization!

3

Professional with expertise in this field

Rating: 5

Sofies Journey organizes an epilepsy educational expo that is the largest in the country. For two full days thousands of patients and caregivers are given access to resources and education from all over the country. They move from booth to booth learning of new ways to fight their epilepsy. Guests at the expo meet neurologists, hospitals, pharma, nutritionists, device manufacturers, non profits, seizure response dogs, and researchers all in one room.
The event then takes a day to celebrate the children (young and old) who are living with epilepsy at the happiest place on earth- Disneyland! When the families take over Main Street USA, each child is reminded that they are not alone. It is quite an experience! that will give you goosebumps. It is a day away from dr appts and therapies - a day to just be a kid.

4

Volunteer

Rating: 5

We were so grateful to find this amazing annual event! Brad and Candy work tirelessly all year long to present the best expo of epilepsy-related information you could hope to find. Through information and awareness booths to speaker presentations by specialists in the field to those marketing new devices to assist those with epilepsy, this event is phenomenal. Every year we come back having learned so much more than we knew before! And the hosts are amazing at connecting visitors with the experts they need to speak with. This is a DON’T MISS event!

4 Brian B.8

Client Served

Rating: 5

Brad, Candy, Sophie and crew are awesome and do a great job in putting this event together, to bring awareness to Epilepsy and bring patients together. We've attended every year, and plan to continue to do so!

3

General Member of the Public

Rating: 5

My husband and I care for my brother, Robert, who has had epilepsy his entire life. His seizures have never been controlled but he maintains such an excellent attitude! We have taken Robert to Epilepsy Awareness Day at Disneyland since year 2 (sadly, we missed year 1) and have the absolute best time! The expo has grown and provides all kinds of free information and just being with other families experiencing the same challenges as us is refreshing and inspiring. We look forward to coming every year! (And we invite more family and friends every year too!)

2

Volunteer

Rating: 5

My family and I have been so lucky to be part of EAD since the very beginning! My older brother was diagnosed at age 14, and our whole family has benefited from attending every year. There is so much education, acceptance, and love during the expo, and then going to Disneyland with a whole crew of matching purple shirts just tops the whole thing off!

3

Professional with expertise in this field

Rating: 5

What a wonderful event! Miracle Flights loved being a part of it! Families were really looking to engage and gather information. Other booths were open to discuss collaboration opportunities and learn from one another. The event ran super smoothly and the energy was really positive throughout.

4 Megan M.5

Client Served

Rating: 5

This was by far one of the best experiences we had as new parents to an epilepsy warrior. Our little guy wasn't able to attend with us but we gained and connected with so many wonderful organizations through this experience. We were able to take and spend time with my family and it was a great way to get them involved and advocating not only for our epilepsy warrior but for the epilepsy community as a whole. Even the little kids got involved and still talk about their experience at epilepsy awareness day. We hope to make it again this year!

3

General Member of the Public

Rating: 5

My connection with epilepsy is my granddaughter. I was able to go to Disneyland and was greatly impressed. My family had a great time and also learned a lot. My daughter earned continuous credit for her work. I am glad their is an organization like this.

3 Buddybear245

Client Served

Rating: 5

I went to my very first Epilepsy Day at Disneyland in 2017. It was the most wonderful experience of my life. I love the fact that the expo is education and how many different doctors, Service Dogs, education, and reasearch there is for people suffering from seizures. When I was diagnosed with epilepsy and seziures at 6months old in the late 80’s there was nothing like this organization for my parents. It is so amazing Sophie’s journey today has given so much to so many people and we are not alone. I love going every year to meet new people, get new information, and yes go to Disneyland but most of all the experience. My family, service dog Bud, and I have been twice and can not wait until November to see everyone again. You have truely changed peoples life’s thank you ❤️

4 samdownie

Volunteer

Rating: 5

I am the UK Ambassador for #Epilepsy Awareness Day at #Disneyland Resort. I've been coming since the beginning (2013), advocating, producing short films, spreading the word etc.. EADDL is the greatest Epilepsy event and educational expo that supports people and families affected by #seizures and syndromes. Brad, Candy and Sofie of Sofies Journey Inc organise this event and they do a fantastic job of putting it on a fab show and day in the park, full of fun, smiles, educational support, Mickey Mouse and screams (on rides). They are a fab, kind nonprofit.

3

General Member of the Public

Rating: 5

This is the best event ever to raise awareness about epilepsy. To meet other families who share experiences like you are going to. To meet professionals who can help you with questions you may have and just help provide support and love you and your family for you! It’s an event that is life changing!

4 My Assistance Dog Inc.

Professional with expertise in this field

Rating: 5

"Sofies Journey Inc." and "Epilepsy Awareness Day at Disneyland" are responsible for uniting the "Epilepsy Community" together and helping us understand we are not alone fighting our battles with "Epilepsy".

"My Assistance Dog Inc." has proudly participated in this wonderful event every year since it's beginning in "2013".

"Epilepsy Awareness Day at Disneyland (EADDL)" has an important goal, which is to raise awareness about the common challenges that are faced every day by people affected by epilepsy and to end the stigma that so many face on a regular basis. It is the combined effort of one family's thankfulness for their daughter's recovery (8 years seizure free) and a united community's passion for winning the fight against epilepsy.

This year, "EADDL" will again be partnering with the ILAE, the IBE, and Citizens United for Research (CURE), and this year's event is expected to draw approximately 80 national and regional epilepsy support groups, and 2,500+ people from six (6) continents, as far away as the UK, Germany, South America, and Australia.

"My Assistance Dog Inc." and other assistance dog organizations proudly participate at both the "Epilepsy Awareness and Education Expo" and "Epilepsy Awareness Day at Disneyland". This is an opportunity for us to help educate individuals and families about the beneficial effects that assistance dogs can have when partnered with someone who is dealing with epilepsy.

Come on out and join us on: November 5th, 6th for the "Epilepsy Awareness and Education Expo" and November 7th, for "Epilepsy Awareness Day at Disneyland". We hope to see you there !

5 Cindy Smith Y.

Client Served

Rating: 5

It meant the world to my daughter on our first visit to Epilepsy Day at Disneyland 5 years ago. To see all the other people epilepsy affects. In our small world at home she was the only one. After that first visit she took pride in her fight. Sophie's Journey is behind that and I'm so grateful!

5 Julie Henckel H.

General Member of the Public

Rating: 5

Sofie's Journey presents the most amazing epilepsy expo there is. We've participated for the past 5 years and have watched it grow and grow. The founders work year around to make Epilepsy Awareness Day and Expo at Disneyland the huge success that it is. A VERY special experience for everyone involved.

5

Board Member

Rating: 5

Sofies Journey is a remarkable non profit born of the need to provide the world with resources and support for anyone with epilepsy. We became involved when we met Sofie. We had to help. This is a vitally important opportunity for people with epilepsy to learn about their illness and to meet and share with others with epilepsy. We applaud the work Sofie’s Journey is doing for OC and LA as well as other countries whose citizens do not have access to doctors, medications, service dogs and more. And they also have a fun day at Disneyland with hundreds of people with epilepsy participating. It’s a wonderful, informative, friend-building non profit.

5 abbycat3175

Donor

Rating: 5

I came in 2017 for the first time met great friend author Lowell Evan's and several others. Am coming in 2018. Will know more people and better awareness. Advocacy and Epilepsy education is very important.

5

General Member of the Public

Rating: 5

My family and I have gone for the past three years and every year it gets better! There is nothing like coming together, at the happiest place on earth, to celebrate and unify the epilepsy community, which I am proudly a member of! All the love and support you get from just walking around and sharing the same purple color attire is one of the most loving feelings in the ... it truly makes you feel as though you are not alone in this fight! Please continue doing what you do!!! We love it and makes us feel a part of a great and inspiring movement! Let’s end epilepsy and find a cure!!!

6 Edward C.

General Member of the Public

Rating: 5

I am so proud to be a participant in this wonderful event every year since it's beginning.

"Epilepsy Awareness Day at Disneyland (EADDL)" began in 2013 with a goal of helping to raise awareness about the common challenges that are faced every day by people affected by the disease and to end the stigma that so many with epilepsy face. It is the combined effort of one family's thankfulness for their daughter's recovery (8 years seizure free) and a united community's passion for winning the fight against epilepsy.

Sofie Levy's school day was almost always cut short. She'd suffer a seizure at noon and spend the rest of the day recovering, and medication was no help. Seven plus years ago, the now-16 year old underwent surgery. Her freedom from seizure inspired her family to create "EADDL".

This year, "EADDL" will again be partnering with the ILAE, the IBE, and Citizens United for Research (CURE), and this year's event is expected to draw approximately 80 national and regional epilepsy support groups, and 2,500+ people from six (6) continents, as far away as the UK, Germany, South America, and Australia.

Come on out and join us for "2018 Epilepsy Awareness Day" on Wednesday, November 7th, 2018. I hope to see you there.

Previous Stories
4

General Member of the Public

Rating: 5

Both, "Sofies Journey Inc." and "Epilepsy Awareness Day at Disneyland" are responsible for uniting the "Epilepsy Community" together and helping us understand we are not alone fighting our battles with "Epilepsy". I have attended this wonderful event each year from the beginning and I can say it is truly educational and loads of fun, fun, fun for me. The "Expo" is full of "exhibits" from many different companies and organizations that are truly beneficial for individuals like me dealing with epilepsy. Then "Epilepsy Awareness Day at Disneyland" with everyone wearing "Purple Shirts" is a truly fun experience with the opportunity to intermingle and meet so may people that share a common cause - dealing with "Epilepsy". I would not miss this special event, because it brings true joy and happiness to us all. So start planning now for this years event, November 6th, 7th and 8th, 2017. I hope to see you there - both me and my "canine partner", named: "Alepo".

5

Board Member

Rating: 5

I am proud to be a part of this amazing organization. They are truly making a difference for people with epilepsy.