DARE Fest 2022

Refsum Disease Awareness Week from June 11-19th

$22,458

137 supporters

$35,000 goal

Team Member

Kristie DeMarco

$14,059

by 64 supporters

After having 4 children and building my professional career at TD Bank at the same time I had lost focus on my wellness and had become overweight.  In 2010 I started a wellness plan that involved eating healthier and exercising.  Over the course of 6 years I lost 75 pounds and became an Ironman level triathlete. Overall, in 2016 I was in exceptionally good health except for some minor hip pain and some migraines.  

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In 2017 I attempted to find a holistic way of resolving my migraines by trying some different nutrition plans. I lowered my carb intake and found that my migraines did resolve.  Little did I know that this new nutrition plan would supercharge a rare disease that had been rather dormant for my entire life.

In hindsight after changing my nutrition plan, I started to have increased left leg pain and neuropathy that would then prevent me from riding and running.  Shortly after that I started to lose my peripheral vision.   My vision looked like what you see in this picture.

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 Between 2017 and 2019 I saw 15 different specialists and had countless diagnostic tests plus a nerve surgery.  I was even suspected to have MS at one point which was not accurate.  I didn’t know it at the time but 2017 would be my last year I would be able to race. I was gradually losing everything I loved to do, and I still had no answers.  I just knew something was wrong with me and nobody was connecting the dots.  

In March of 2019 I was diagnosed with inherited retinal dystrophy and I would gradually lose my vision.  I still did not have answers to the other symptoms I was experiencing.  It was recommended at the time to get genetic testing since I have four children. I was so glad that I did the genetic testing as it provided me a true diagnosis of everything that was going on.  The genetic test showed that I had Refsum disease.  What I learned over this time is how important it is to trust in yourself and push for a diagnosis.

You would think that once you have a diagnosis that your doctors would know what to do and you would receive a treatment plan. However, what I learned very quickly was that in rare disease this was not really the case. You find yourself becoming the expert and educating many on the disease.

I was incredibly lucky in this journey to connect with a great group of patients through a private Facebook and Yahoo group.  I learned from them all about the diet and some of the challenges living with the disease. Many had been impacted by Refsum for many years.  Many of them even with good compliance with the diet have significant vision loss, hearing loss and mobility challenges.  I learned Refsum Disease was really a forgotten disease. There had been some great research done in the past to understand the disease and establish the current therapies; however, no one was actively researching for a cure or better therapies.

After everything I learned, I decided I wanted to take action. I wanted to change my potential future and make a positive impact for rest of our Refsum community.    We started Global DARE Foundation in October 2019 to do exactly that.  I am excited to already be talking with our Medical & Scientific Advisory Board on Gene Therapy and actively moving forward research in this area.  We will need support of the whole community to make this happen.  Please consider donating! 

We are stronger together!

Team Members

Kristie

$14,059

64 supporters

Darrell

$3,674

37 supporters

Susan

$2,469

7 supporters

Silvia

$209

3 supporters

Millie

$149

2 supporters

Alcina

$58

2 supporters

Paula

$100

1 supporter

Faith

$0

0 supporters

Event

JUN
11

DARE Fest 2022

Saturday 8:00 AM - Sunday 11:59 PM EDT

Live Stream

Add to Calendar 2022-06-11 08:00:00 2022-06-19 23:59:00 America/New_York DARE Fest 2022 See the Event details below

Details to view the event are private and will be sent along with your ticket purchase.

See the Event details below

Organizer

Created By

Global DARE Foundation

EIN: 84-3343395

Story

Event Details

Global DARE Foundation will be hosting DARE Fest 2022 from June 11-19th. This event will be the first annual Refsum Awareness Week. During the week, we will be hosting a variety of exciting virtual events to educate, raise awareness, build community around the world and have some fun. The event will be for the entire Refsum Community including patients, caregivers, clinicians, dietitians, researchers and passionate supporters.

Virtual Online Festival June 11th-12th – Online event includes around the clock access to presentations, live Q&A sessions, recipe competition, breakout sessions, 1:1 networking and games. Access to the online festival activity will cost $29 and will include access to prizes.

DARE Fest 5K Activity (June 11th – June 19th) – a virtual 5K activity (run, walk, bike, swim, roll, etc.) that can take place anytime throughout the week either individually or as groups. Tickets for the 5K are $29 and will include access to prizes.

Combo & Special Donor Tickets: A discounted ticket will be available for $49 for those participating in both the 5K and the online festival. Special donor tickets are available for those wanting to support Global DARE Foundation's programs.

Early Bird Discount: If you register before May 21st, you will receive $5 off your registration by using this discount code: EarlyBirdSpecial

We have created special festival merchandise. Access the DARE Fest Store to purchase event t-shirts, hoodies, bags and mugs. Part of the proceeds will be provided to Global DARE Foundation.

DARE Fest Store


Global DARE Foundation's Mission

Global DARE Foundation's mission is to promote world-wide awareness and better quality of life for all who are diagnosed with Adult Refsum Disease.  DARE stands for Defeat Adult Refsum Everywhere. We DARE to believe there is a cure for Adult Refsum Disease.

Adult Refsum disease is a genetic disorder that impacts the metabolism of phytanic acid which is found in food.  The disease significantly impact quality of life of patients by causing vision loss, hearing loss, loss of smell, mobility issues and more.  People with Refsum Disease must also go on a very strict diet to slow progression of current symptoms and avoid life threatening symptoms.   A better therapy is needed!

Please help support this important initiative. Any amount will make a difference. Please contact us by email ([email protected]) if you have any questions.

Watch this short video to learn more about Refsum Disease and the work of Global DARE Foundation.

 https://www.youtube.com/watch?...

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$22,458

137 supporters

$35,000 goal

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Global DARE Foundation

A 501(c)(3) organization

EIN 84-3343395