The Young and the RA

I love your website! I have to get deeper into it, as I feel like I’ve only scratched the surface. I wish I had the programming ability for website creation that you do! Love the little clips and pics! Keep up the great work!

Lori
MomsWithRA.org

Thanks for the comment Bob. I’ll add you to my blog roll!

S.P. My name is Bob Merc…I’m a 50year old male with RA from Scranton, Pa. I’m pretty much home bound and have been doing an internet sports-talk show from home to keep my sanity from this VICIOUS affliction. Anything I can do on the radio side to help out…I would. My blog is http://www.scrantonpasportsshift.blogspot.com and you can reach me anytime at spasportsshift@hotmail.com I not only talk sports…I write too…I saw you have a journalism degree…I feel terrible you are so so young and have to deal with RA…God Bless you…Bob Merc…btw…the main radio page I broadcast from is at http://www.tpsradio.net the guy who runs it was kind enough to put an Arthritis Foundation link on it for me…talk to ya soon I hope!

S.P,

I’ve been reading your entries on follow-on biologics, and I wanted to let you know I am writing you today on behalf of Insmed, Inc. a biotechnology company based in Richmond. Insmed has been very active in both the development of and support for access to follow-on biologics.

While an estimated $20 billion worth of biologic drugs are expected to come off patent by 2015, no approval pathway currently exists at the Food and Drug Administration (FDA) to make follow-on biologics available to patients. Without this important pathway biotech companies will continue to have a monopoly and competition will not exist in the market. Without competition access to these critical medicines will remain expensive, will stifle innovation, and will continue to drive up the overall healthcare expenditures in the US.

Insmed has just launched a unique campaign to promote awareness for the need of a follow-on biologics pathway through education efforts, research, advocacy, and the internet. And we need your help in telling this story. You and your blog are the voice that can resonate in the ears of Washington and make this important step in access, affordability and competition a reality.

Last week, Insmed launched a YouTube page (http://www.youtube.com/insmedinc) to promote a vigorous discussion of the need for follow-on biologics that Washington will respond to. In the video, one of Insmed’s talented scientists urges others to join him in contributing to this debate by posting their own videos on YouTube about the urgent need for a follow-on biologics pathway.

In addition, we’ve also just this morning released a major econometric study on the savings a FOB industry would provide to patients and payers by former Clinton Under Secretary of Commerce Robert J. Shapiro. Dr. Shapiro’s report finds that Congress could save patients more than $378 billion over the next twenty years by acting on follow-on biologics legislation. Without it, a small group of companies will continue what is essentially monopoly status – even if their patents have expired. The full text of the study can be found on Insmed’s website at: http://www.insmed.com

We all have important stories to tell. The science is ready, the need is here and Congress can be convinced to act. It is up to us to make the difference. I hope that you will share this video and study with your colleagues that you feel might be interested in participating in this very important discussion.

Thanks for your interest!

Yo,

I guess it goes without saying, but you obviously know your stuff and present it in a straightforward and engaging way. As is true for me with many of the class’ blogs, I am woefully uneducated in your area of expertise. But the site really did well in making sense out of such a complex disease, and it did it without getting bogged down in scientific jargon that might be found on other medical sites. It’s also pretty impressive that you are able to post 5 times each week and still maintain such a variety of topics and personal anecdotes.

Some of my favorite posts were the ones where you discover something that you yourself are still learning about, such as last night’s entry about House’s ruminations on cold weather. These types of posts help keep the blog current – one of the most important qualities of any blog – and maintain a balance between educating people about rheumatoid arthritis and looking forward at future possibilities.

It’s also an obvious testament to your blog that so many people in the outside community have found it and commented on it. Hooray for relevance.

There’s almost nothing I can say in the way of suggestions for improvement. I suppose I will go ahead and agree with Maude that some of the posts are a little bit lengthy, but again, there’s not really a way to say all you’re trying to say in short form. Oh well. Keep up the good work.

Thanks for the shout outs. And I love the input, Maude. I’ll work on it!

Thanks for the great blog! I’m a university student with a similar chronic pain condition so I can really relate to your blog about not being able to quit school because there is more to you than your illness, no matter how hard hanging in there can be! All the best!

Hey Sarah!
Well, first I am going to say something strange and that it that one of the things that I really like about your blog is that I feel like I have gotten to know you through it.

You do an excellent job of combining the personal with real information that anyone with or without R.A. can find enlightening and valuable.

I also noticed that you really interact with the people that comment on your page and since I am terrible at that I know what kind of effort you are putting forth to actually foster a real community.

I love the name of your blog (since it combines your love of TV with all this useful info)and I think the design is easy to command, although I guess I would like to see a little more image base.

Finally I am of the type of person who can not for the life of me read longer blog posts. So, while I in no way want you to change the style or tone of your writing I wonder if there might be a way that you could make the posts a little shorter so that people like me (with terrible attention spans) will be able to more easily access all of the wonderful information you provide.

Thanks! I so agree. We need to get the word out about RA. Thanks for checking out my blog!

Thanks so much for creating this page! You really did something wonderful for people like us with RA. The hardest thing to deal with is that people have really no clue what RA is. I appreciate what you are doing. PLEASE keep it up!