Three years ago, we were lucky. Once Morgan was diagnosed with Juvenile Dermatomyostiis, a rare autoimmune disease, we were able to see a super specialist at a Center of Excellence. This means that we got to have a world expert on this rare disease that only affects around 5,000 kids in the US give her expert opinion on the way that we should treat Morgan's disease. She knew from experience that she needed to be aggressive because that is what has made the biggest impact on the hundreds of kids she treats.
Since then, we have met many kids who didn't have that luck. They saw a doctor who is less experienced with JM, didn't know the most current research, and didn't have experience with many patients (often they have only seen a few in their local area). Each time, we were so thankful that we had such good care right at the beginning. We believe that it has made a huge difference in the outcomes for Morgan.
However, we don't think that luck should determine who can see these doctors and who can't. Part of the challenge is educating the masses that these super specialists exist at Centers of Excellence for most diseases. In fact, these Centers of Excellence often work with partners like American Airlines and the Ronald McDonald House to help those who can't afford it. Since most of these Centers of Excellence require that the patient bring ALL of their medical history before they can be seen, it becomes yet another barrier to people seeing these specialists.
I am not sure if you have ever tried to get your medical record (you should!), but it is not an easy process. Imagine being overwhelmed with a new diagnosis that brings many doctors visits, missed days of school and work, financial stress, and family stress. Now, you have to contact each provider and sign different forms and follow whatever process they require for you to get the records. Then, you have to follow up on each one, often multiple times, to make sure that the doctor actually gets them.
Out of this experience, CareSync was born. CareSync offers an application on the web and mobile to store all of these records for you to access forever. But that is not the great part. The best part is that the CareSync Specialists will actually do the work to get those records for you so that you can concentrate on your loved one. These CareSync Specialists will also summarize the information and keep it up to date after each appointment. You can relax and know that you don't have to give the same medication list to each provider. You can relax knowing that you will always have access to your information no matter where you are in the world. You can relax knowing that you will get appointment reminders and task reminders to be sure you don't forget important items to do. You can relax knowing that someone else is looking out for you in this healthcare maze.
I believe that CareSync should also be available to those who cannot afford it. I believe that everyone who needs access to a Center of Excellence should get it. We started a campaign on Medstartr to create a scholarship fund. We will allow Centers of Excellence to refer to us and we will allow patients to apply for the free CareSync service. CareSync is doing its part to help these patients. Will you help us? We are offering many buy one get one packages through the campaign on Medstartr. You buy for yourself or someone you love, and we will donate one to someone who needs it.
You can even donate just $15 to show your support or $35 to get a cool t-shirt. The buy one get one packages start at $99. I hope to see your support.
Sincerely,
Amy Gleason
Since then, we have met many kids who didn't have that luck. They saw a doctor who is less experienced with JM, didn't know the most current research, and didn't have experience with many patients (often they have only seen a few in their local area). Each time, we were so thankful that we had such good care right at the beginning. We believe that it has made a huge difference in the outcomes for Morgan.
However, we don't think that luck should determine who can see these doctors and who can't. Part of the challenge is educating the masses that these super specialists exist at Centers of Excellence for most diseases. In fact, these Centers of Excellence often work with partners like American Airlines and the Ronald McDonald House to help those who can't afford it. Since most of these Centers of Excellence require that the patient bring ALL of their medical history before they can be seen, it becomes yet another barrier to people seeing these specialists.
I am not sure if you have ever tried to get your medical record (you should!), but it is not an easy process. Imagine being overwhelmed with a new diagnosis that brings many doctors visits, missed days of school and work, financial stress, and family stress. Now, you have to contact each provider and sign different forms and follow whatever process they require for you to get the records. Then, you have to follow up on each one, often multiple times, to make sure that the doctor actually gets them.
Out of this experience, CareSync was born. CareSync offers an application on the web and mobile to store all of these records for you to access forever. But that is not the great part. The best part is that the CareSync Specialists will actually do the work to get those records for you so that you can concentrate on your loved one. These CareSync Specialists will also summarize the information and keep it up to date after each appointment. You can relax and know that you don't have to give the same medication list to each provider. You can relax knowing that you will always have access to your information no matter where you are in the world. You can relax knowing that you will get appointment reminders and task reminders to be sure you don't forget important items to do. You can relax knowing that someone else is looking out for you in this healthcare maze.
I believe that CareSync should also be available to those who cannot afford it. I believe that everyone who needs access to a Center of Excellence should get it. We started a campaign on Medstartr to create a scholarship fund. We will allow Centers of Excellence to refer to us and we will allow patients to apply for the free CareSync service. CareSync is doing its part to help these patients. Will you help us? We are offering many buy one get one packages through the campaign on Medstartr. You buy for yourself or someone you love, and we will donate one to someone who needs it.
You can even donate just $15 to show your support or $35 to get a cool t-shirt. The buy one get one packages start at $99. I hope to see your support.
Sincerely,
Amy Gleason
