July 13, 2019
July 1st was the first day for patients to be seen at the new UF Fixel Institute and Tyler was the first patient to be seen. The institute is also home of the first dedicated Dystonia Center which incorporates compassionate clinical care and research focused on Dystonia. Tyler is currently doing work with InterMed and helps with whatever needs we have. He is living in an apartment behind us and attends lots of car shows. Tyler has had batteries replaced again this year but the surgeries went well.
Samantha just had her second battery replacement surgery in 6 months and although the surgery went well we are keeping an eye on the area for infections.
She is scheduled to go with St Michelle to visit the University of Alabama this week before her orientation and start of school the first week of August. She will be in the nursing program.
Luke is starting high school this year and is going to a new school - Oak Hall Academy. He leaves soon to participate in the UNC team camp for high school teams. He is working out and eating right. He is still symptom free of Dystonia but also continues to be one of the most ardent supporters of Tyler’s Hope and his siblings.
Making A Cure Come True
When you wish upon a star
Makes no difference who you are
Anything your heart desires will come to you
If your heart is in your dream
No request is too extreme
When you wish upon a star
As dreamers do
Fate is kind
These lyrics come to mind when I think of Tyler's Hope. Dystonia has not yet been cured, but there is a cure and we will find it. Dystonia, a neurological movement disorder effects both children and adults. All who have this disorder wish for a cure and with your time, help, and support, the researchers will be able to find the cure and answer their dreams.
Ways to help:
To donate to Tyler's Hope a Cure for Dystonia, please click here.
To volunteer time at any of Tyler's Hope upcoming events or to become a general volunteer, please click here.
To volunteer to become Tyler's Hope bookkeeper (or as an internship) please click here.
If you have not seen Caddyshack, please do yourself a favor and rent it on iTunes or better yet, purchase the movie on Amazon (log into Amazon Smile so the proceeds go to Tyler's Hope of course).
The movie is hysterical; from the outfits, to Billy Murray's character, I promise it will have you rolling on your bellies with laughter. It is a family favorite.
With that being said, Caddyshack can actually help you with your golf experience. For example, what to wear:
It's safe to say that golf is one of the only sports where you can fully express yourself through many shades of color and it is encouraged. I think that Al Czervik (guy on the right) knew exactly what he was doing. You don't want to be that guy who shows up in khaki slacks and a one-color pastel top (or do you?, your call, but don't say we didn't warn you).
When you wear a fun outfit golfing, I believe that it can make the golfing experience more fun and exciting. Don't take it from me, but Judge Elihu Smails doesn't seem to be having a good time in his plain attire.
Even if bright clothing is not your style and you choose to tone it down a bit, you will still have a blast becuase who doesn't like a golf tournament where the proceeds help find a cure for Dystonia? Let's all be like Judge Smalls and Chevy Chase and get along. Don't be a Carl Spackler (Bill Murray) and fight with a gopher.
At the end of the day, we are all at The Hope for a great cause and to be friends with one another, no matter how great or poor your golf game might be. So have fun and don't take it too seriously!
Millennials. This word defines a large portion of the population born between the mid-1990's and early 2000's. That is a HUGE generation with multiple characteristics and personalities.
Targeting one such generation can be difficult but with these simple tips, attracting Millennials to your charity can be easy. I find myself, a Millennial, drawn to companies and organization who follow these tips:
1. Go Mobile
It's 2017. People, especially Millennials live on their phones. Need to know the square root of 144? Google it. Need to know how many tablespoons are in a cup? Look it up. Need to donate to a charity? Easy. In a study conducted across all ages, it was found that those between the ages of 18 and 24 look at their phones most often, with an average of 74 checks per day according to Time. Don't let me tell you, let the researchers and reputable sites tell you how important having a sufficient mobile site can be for your charity or business.
2. Get On a Name Basis; Personalization
Millennials want to know that brands are paying attention to them. After all, Time Magazine did call Millennials the "Me Me Me" generation. Based upon research, 23% of 18-24-year-olds are more likely to support a charity in the long term if they have a more personalised experience. For example, when sending an email, make sure the information is relevant to the age group. Millennials can be interested in vastly different content than Baby Boomers. Make sure you know your audience for better engagement.
3. Be Real; Authenticity
We know when a company is being "fake." When I say "fake," I mean not genuine. Millennials want trust; we want to donate our time, money and efforts into a company we can relate to and know that their intentions are pure.
So build your campaign or cause around things that are relevant and relatable to Millennials. Kim Roberts, who is on the panel for the ‘Marketing to the millennials’ session at Third Sector’s Annual Fundraising Conference, explains, “This is an incredibly generous audience; many of them will already give freely of their time and they care about the world around them. Learning to understand them, and developing strategies and tactics for communicating with them is central to growing your charity’s impact in this area.”
Nowadays, social media is everything. It is how someone expresses themselves, promotes businesses, and even becomes famous through many social media outlets. But why does being a social media superstar matter to charities? I'll tell you.
The people who have a strong social media presence AND are highly involved in charities can have a great impact and use their fame for higher purposes. Social media is seen as the bestsellers mode of communication and to have a social media superstar publicly supporting your charity can bring many rewards.
People are more likely to follow the same charity that their social media superstar follows. Think about it...when Kim Kardashian wears a certain outfit or promotes a particular brand, some of her followers immediately follow that brand or purchase outfits similar to hers.
A better example is Matt Damon partnering with Stella Artois and Water.org to help end the global water crisis (http://BuyALadyADrink.com) To check out the video: youtu.be/AEtJNMGa8fE
Tyler's Hope has a distinct motto: Moving The Needle. It means we will are making a difference. As most know, Tyler's Hope Foundation was established to advance research for a cure, discover effective treatments and to promote awareness and education of DYT1 Dystonia. Everyone should live by the motto of "make a difference."
One way to make a different is by donating time, money, and support for DYT1 Dystonia. The great Winston Churchill, a favorite of mine, has said many great quotes; two that stand out to me are:
Here at Tyler's Hope Foundation, the researchers depend upon donations to further advance their research to find a cure. We will never, never, never give up our hope to finding the cure for Dystonia. There is a cure, and it will be found with your support.
Taste of Gainesville
We are back...for Tyler's Hope 6th year at Taste of Gainesville that is! We are proud and excited to be a part of such a great event. This Sunday, prepare yourself for an iron chef challenge, plenty of food and drinks, and Dystonia awareness. While the event is not soley for promoting Dystonia, it is a great event to help spread the word of our non-profit and of many other great organizations and businesses.
Child Advocacy Center, Ronald McDonald House, Pace and Tyler's Hope are the four main charities that are raising awareness at the event. Tickets are $125 a piece but a majority of the proceeds go back into the charities. Click here to participate.
Dystonia: The Breakdown
What exactly is Dystonia?
Let me break it down. Dystonia is a neurological movement disorder characterized by involuntary muscle contractions, which force certain parts of the body into abnormal, sometimes painful, movements or postures. Dystonia can affect any part of the body including the arms and legs, trunk, neck, eyelids, face, or vocal cords.
Dystonia is not fatal, but is a chronic disorder with often unpredictable prognoses. Dystonia is the third most common movement disorder after Parkinson’s Disease and Tremor. Dystonia does not discriminate: it affects people of every race and ethnic group and one-third of Dystonia patients are children. Dystonia affects more people than Muscular Dystrophy, Huntington’s Disease and Lou Gehrig’s Disease combined.
Research has shown that there is a cure for this neurological movement disorder but the cure has not been found...yet. With donations, volunteer, and word of mouth, Dystonia can be cured much faster.
The New Website
The team at Tyler's Hope is very excited for the new website that will be representing the foundation. With new images, features, and upgrades, the new website is sure to impress. Please let us know what you think about it! Follow 'Tyler's Hope for a Dystonia Cure' on all social media platforms (easy 'click' on icons in the footer) to show your support. We look forward to your generosity and kindness.
-The Tyler's Hope team