#Heart Month

[elliespectacular]

Link Gets a Heartfelt Email

Link gets an email that inspires him to do what he normally does and change nothing

A YTP made in partnership with The American Heart Association

Full video with captions here

Thanks <3

[jacobharvestart]

Happy Heart Month Everyone 💖

[roamwithahungryheart]

Rare Disease Day 2023

I'd like to start by saying a huge thank you to everyone for your support and love after my recent surgery, it truly means so, so much.

As it's Rare Disease Day once again, I want to share my experience in the hope that it helps someone out there to not only understand what it's like to live with a rare disorder, but also to feel a little less alone. So, let's get down to it.

For those of you who don't already know, I was born with a Dandy-Walker malformation and an atrioventricular septal defect specifically known as Tetralogy of Fallot. ToF is characterized by four defects, and according to my current surgeon, my case isn’t textbook. God's plan was to make me as unique as possible!

I had corrective surgery at just 5 weeks old, and my second repair in October 2022. I’ll need further surgeries in the future.

While ToF is one of the more commonly known conditions, DWS is largely unrecognized. Even the specialists I’m under don’t know everything about DWS. That’s the trouble with a disorder with so many variants.

According to statistics from the Dandy-Walker Alliance, 1 in 10,000 children are born with DWS. It’s also more likely to affect women than men. Some people don't live past the age of 40.

My malformation and co-existing symptoms are milder than they could have been. I’m one of the lucky ones who won’t need a hydrocephalic shunt, or end up in a wheelchair, but for some, that’s the reality of living with DWS.

The defining trait of Dandy-Walker Syndrome is an abnormality of the cerebellum, forming a cyst at the base of the skull, and complete absence of the cerebellar vermis. In severe cases, increased cerebral fluid is present. Children born with DWS will have delayed development and poor motor control. My hands mirror each of their movements, and I occasionally experience myoclonic jerks.

Another side effect of DWS is epilepsy. I've had a lifetime of headaches, dizziness and seizures. There are 41 different types of seizure, and I can experience any one of them at any given time. So in short, it's sometimes a real chore to get through the day! But in spite of it all, I've managed to live a reasonably normal life.

I turn 30 this year, and I've been thinking a lot more about my future goals, because as I'm sure you know, women face a lot of pressure to have their shit together by the time they turn the big 3-0. I’m a woman who would love to have children, but know that because of my health, it might never happen. Or if it does happen, there’s a significant chance my child could end up with all the same health complications I have. I can’t count the times I’ve kept myself awake at night, sometimes even cried because of it. Sometimes it’s scary having to admit and accept that. However, I'm a big believer in the old adage 'where there's a will, there's a way'. It's gotten me this far, and I don't intend to let anything stop me from living the life I deserve.

If you're reading this and you have a rare chronic illness or disability - or any disorder - I hope you take a little time today to remind yourself of how unique and wonderful you are. Take pride in being perfectly imperfect.

You are seen, you are loved, and you are stronger than you believe.

[heartassociationplatforms]

The American Heart Association platforms - how can they improve?

By:Leah Holland

The non-profit I chose is the American Heart Association. The American Heart Association is a non-profit that helps fight heart disease and stroke. The organization supports getting information out on heart health, training people in CPR, helping to invest in research and more. This organization is meaningful to me because I was born with a heart defect. In highschool I created a senior project that was geared towards heart health. I used the American Heart Association to help me throughout the process.

The American Heart Association's vanity metrics are impressive. They have a generous amount of followers on different social media platforms, although not as many as you might expect for a big organization.

I believe that The American Heart Association could improve their metrics by having more interactive posts. For example on their instagram they have a lot of posts that state facts or quotes. This is good information but it doesn’t draw in the audience as much as if it was a video or content that you can interact with. I think the thing they should focus on is gaining a wider range of audience. Most of their followers are 30+ after looking at their following. A good way they  could improve this is doing collabs with the younger generation for example a college sports team talking about it and helping promote it. 

The advanced metric that would be helpful for the American Heart Association is Audience Engagement.  Utilizing influencers and advocates to encourage others to interact and engage with the content.  This would be particularly effective on TikTok(link) and Twitter (link). Audience Growth would be another metric that would be beneficial for the organization to expand.  Increasing their audience and the importance of the organization and their efforts would be a helpful way to get their message out to more individuals.  For Audience Growth, focusing on TiKTok and Instagram would be beneficial.

The Channel Metric that would be important to increase would be insights.  Reaching more individuals and getting them engaged on Twitter and TikTok could help extend the message to substantially more individuals. For Behavioral Metrics Click through links are probably most important since they are working to get people involved and to their website.  Utilizing Facebook (link)and Twitter would be important for this metric. They can use click-through links to specifically drive the audience to the donation page as well as specific information on heart health and the organization.

[leahholland4]

The American Heart Association platforms- How can they improve?

By: Leah Holland

The non-profit I chose is the American Heart Association. The American Heart Association is a non-profit that helps fight heart disease and stroke. The organization supports getting information out on heart health, training people in CPR, helping to invest in research and more. This organization is meaningful to me because I was born with a heart defect. In highschool I created a senior project that was geared towards heart health. I used the American Heart Association to help me throughout the process.

The American Heart Association's vanity metrics are impressive. They have a generous amount of followers on different social media platforms, although not as many as you might expect for a big organization.

I believe that The American Heart Association could improve their metrics by having more interactive posts. For example on their instagram they have a lot of posts that state facts or quotes. This is good information but it doesn’t draw in the audience as much as if it was a video or content that you can interact with. I think the thing they should focus on is gaining a wider range of audience. Most of their followers are 30+ after looking at their following. A good way they  could improve this is doing collabs with the younger generation for example a college sports team talking about it and helping promote it. 

The advanced metric that would be helpful for the American Heart Association is Audience Engagement.  Utilizing influencers and advocates to encourage others to interact and engage with the content.  This would be particularly effective on TikTok(link) and Twitter (link). Audience Growth would be another metric that would be beneficial for the organization to expand.  Increasing their audience and the importance of the organization and their efforts would be a helpful way to get their message out to more individuals.  For Audience Growth, focusing on TiKTok and Instagram would be beneficial.

The Channel Metric that would be important to increase would be insights.  Reaching more individuals and getting them engaged on Twitter and TikTok could help extend the message to substantially more individuals. For Behavioral Metrics Click through links are probably most important since they are working to get people involved and to their website.  Utilizing Facebook (link)and Twitter would be important for this metric. They can use click-through links to specifically drive the audience to the donation page as well as specific information on heart health and the organization.

[froggydraws]

happy pride from Paris' superheroes

[nationwidechildrenshospital]

"Pediatric patients can be born with life-threatening heart defects. Now, with early detection and surgical correction, patients can live a normal life and improved chances at life. Watching my pediatric patients, who are born with heart defects, grow into healthy, young adults is always amazing to witness."

DingDing Xiong, Physician, Cardiology, Nationwide Children's Hospital - Toledo

[pangur-and-grim]

Belphie was having a weird issue that freaked me out, so I took him in, and they said he could be in early stage heart failure. he’s going to stay while they do an echocardiogram, and then they’ll let me know.

[ayanathedork]

to the tumblr anon who asked for more fiddauthor, you are welcome -w-

[happyheidi]

｡ﾟﾟ･｡･ﾟﾟ｡ ﾟ. October will bring blessings.

ﾟ･｡･ﾟ

[ridleyytheriddler]

🩵🤎🖤❤️❤️❤️❤️❤️❤️❤️❤️ 🩷🩵🤎🖤🧡🧡🧡🧡🧡🧡🧡 🤍🩷🩵🤎🖤💛💛💛💛💛💛 🤍🩷🩵🤎🖤💚💚💚💚💚💚 🩷🩵🤎🖤💙💙💙💙💙💙💙 🩵🤎🖤💜💜💜💜💜💜💜💜

[silvykinesis]

Little doodle of them before I start playing kh3!

[joethesparkle]

Reigen genuinely had no idea

[leahholland4]

The American Heart Association platforms - how can they improve?

By:Leah Holland

The non-profit I chose is the American Heart Association. The American Heart Association is a non-profit that helps fight heart disease and stroke. The organization supports getting information out on heart health, training people in CPR, helping to invest in research and more. This organization is meaningful to me because I was born with a heart defect. In highschool I created a senior project that was geared towards heart health. I used the American Heart Association to help me throughout the process.

The American Heart Association's vanity metrics are impressive. They have a generous amount of followers on different social media platforms, although not as many as you might expect for a big organization.

I believe that The American Heart Association could improve their metrics by having more interactive posts. For example on their instagram they have a lot of posts that state facts or quotes. This is good information but it doesn’t draw in the audience as much as if it was a video or content that you can interact with. I think the thing they should focus on is gaining a wider range of audience. Most of their followers are 30+ after looking at their following. A good way they  could improve this is doing collabs with the younger generation for example a college sports team talking about it and helping promote it. 

The advanced metric that would be helpful for the American Heart Association is Audience Engagement.  Utilizing influencers and advocates to encourage others to interact and engage with the content.  This would be particularly effective on TikTok(link) and Twitter (link). Audience Growth would be another metric that would be beneficial for the organization to expand.  Increasing their audience and the importance of the organization and their efforts would be a helpful way to get their message out to more individuals.  For Audience Growth, focusing on TiKTok and Instagram would be beneficial.

The Channel Metric that would be important to increase would be insights.  Reaching more individuals and getting them engaged on Twitter and TikTok could help extend the message to substantially more individuals. For Behavioral Metrics Click through links are probably most important since they are working to get people involved and to their website.  Utilizing Facebook (link)and Twitter would be important for this metric. They can use click-through links to specifically drive the audience to the donation page as well as specific information on heart health and the organization.

[vos0q]

“Poison of Salvation”

[loxli]

Namine with EDS for disability pride month? Hell yeah!