So Proud!

Wow! I am so incredibly proud of Team What About Bobby! This past weekend these guys and gals ( plus a few not pictured) participated in ALS TDI's Tri State Trek, a 3 day 270 mile charity bike ride from Boston to New York. This team is absolutely awe inspiring to complete this ridiculous ride! We are talking about a rough course, with some insane hills and heat. I am so proud of each and every one of you and am honored to call you my friends and family! I can't wait until next year! 

ALS Life Hack!

If you are confined to a wheelchair it is very likely that getting pants on and off is a pain in the butt. What I have been doing to overcome this obstacle is having zippers installed on the legs. That way getting pants on is as easy as laying the pants down, putting me on the pants and zipping up the legs. This method has made getting ready so much easier. 
 

I have a local tailor install the zippers for me. She uses heavy duty sleeping bag zippers for them. These alterations cost me anywhere from thirty to fifty dollars and in my opinion are completely worth it. 

Want to help me fight ALS?

A great way to help myself and thousands of others fight ALS is to contact your Congressmen and Senators and ask them to support the bills listed below. Thanks so much for your help and for sharing this post! 

 

Bills to Support

 
Right to Try Act: allowing terminally ill patients expedited access to experimental treatments (H.R. 3012) (S. 2912)

REGROW Act: which would jump start stem cell therapies (S. 2689)

RESULTS Act: permitting reciprocity with foreign treatments not yet available in the US (S. 2388)

ALS Disability Insurance Access Act: Which would eliminate the five month waiting period to receive disability benefits for those diagnosed with ALS (H.R. 5183)  (S.  2904)

Ensuring Access to Quality Complex Rehabilitation Technology Act: Which would continue to provide patients access to devices such as power wheelchairs (H.R.  942)  (S. 948)



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ALS Advocacy Month!

The month of May is ALS awareness month. As a part of that, I will be working all month long to gain support for Bill H.R. 3012 the Right to Try Act of 2015. This bill, when passed will grant terminally ill patients access to potentially life savings treatments that are still undergoing trial and have passed a safety trial. I have been trying to gain support from my Congressman for some time now, and encourage you to get in touch with yours as well! 

The following is my first email to my Congressman of ALS advocacy month. I will be emailing him daily until I get a response and an opportunity to discuss the bill with him:

Dear Congressman Cicilline, 

Happy ALS Advocacy month! This month I will be doing everything I can to get support for Bill H.R. 3012 the Right to Try Act of 2015. I want to encourage others to join in around this country, so I will be sharing this and all of my emails with you online. 

I have been trying to get a response from you for about two months now. Initially I had an appointment with you for March, 29 to discuss Bill H.R. 3012 with you. This appointment was canceled by a member of your staff and I was told would be rescheduled. I have since called multiple times to try to get a date and keep getting told that someone will call me back or given a new person in your office to email. I would really like the opportunity to discuss this bill with you as it could help save my life and the lives of thousands of other people fighting ALS. 

As I have mentioned previously, my name is Robert (Bobby) Forster and I am a 27 year old Newport resident fighting for my life. I was diagnosed with ALS in 2014, a disease with no effective treatments approved by the FDA. However, there are many promising treatments that are currently in FDA approved trials. Bill H.R. 3012,The Right to Try Act of 2015, would allow terminally ill patients like myself the ability to try potentially life saving treatments that have passed a phase 1 safety trial. I was involved in a phase 2b trial last year that resulted in tremendous improvements. However, because it is not yet approved by the FDA, I cannot continue with treatments until it is approved (likely 3 years). By the time that this treatment is approved I along with thousands of others will likely be dead. So I beg you to please sign on as a cosponsor to this bill. Doing so will literally help save my life. I look forward to hearing back from you. Thanks so much and have a great day!