Dear Friends

Today the new head of pharmaceutical company Lilly UK Jean-Michel Cosséry said that patients don’t want companies like his to spend their money sharing “old data.” These “old data” are, of course, the results on which all treatments in current use are based! Perhaps he is hoping that AllTrials can be headed off into a siding, like all previous attempts to establish transparency.

A committee of MEPs will soon vote on proposals that would increase transparency of clinical trials. However, there are 350 lobbyists for the pharmaceutical industry at the European Parliament. MEPs are hearing Cosséry’s arguments against transparency (and others) every day. We have until 29^th May to make sure they hear our arguments.

• The trust of patients who have volunteered for clinical trials is betrayed when findings generated by their participation are locked away
• Incomplete information means doctors could make bad treatment decisions and miss opportunities for good medicine
• Researchers don’t know what was found in previous trials, or even that some trials happened, so trials are repeated unnecessarily

If you are in Europe:

The committee looking at the clinical trial regulation has 67 MEPs from 22 different European countries. Their names, the countries they represent and their email addresses can be found here. http://www.europarl.europa.eu/committees/en/envi/members.html#menuzone

Please write to the MEP(s) from your country telling them why you want increased transparency. Let us know if you have written to them and if you get a response.

If you are not in Europe:

We know these kinds of discussions are going on with every regulator around the world. Please talk to us about how AllTrials can take off in every country.

www.AllTrials.net

In honor of Mother’s Day, ALS Connections is happy to have guest blogger, Katelynn, share a special story.

In December 2011 my Grandma Paulette was diagnosed with ALS. ALS stands for Amyotrophic Lateral Sclerosis, but is better known as Lou Gehrig’s Disease. ALS is a disease that affects a person’s ability to walk, talk, eat, swallow, and eventually their breathing. The progression of losing these abilities varies for each patient. However, the person never loses the ability to think the way they did before their diagnosis.

When my grandma was diagnosed with ALS, she was in total denial. She screamed at the doctor, telling them they needed to fix it. My grandma was such a strong woman. I couldn’t even imagine how she felt hearing those words come out of the doctor’s mouth. As she held on, I noticed every time we went to visit, she was getting really skinny. It was also getting harder to understand her. Sometimes I felt guilty that I rarely looked at her when she was in her wheel chair. I tried to make her feel normal again, which she still was.

As time went on, the whole family was used to my grandma’s physical state. But, we knew her time was getting shorter. Everyone was trying to hide the tears; even I was at times. Although everyone was sad, no one showed it and I tried my best to share my happiness. Every ounce I had. My grandma, this whole time, thought she was just a burden. No one thought that way about her. As soon as my mom told me what she said, I gave my grandma the biggest hug I could ever give.

My last big trip with her was to Disney World. It was her favorite place in the world. She had so much fun and I had a blast. Seeing her smile made my day. This was her last wish. It was only right we grant it. We went on her favorite ride: The Jungle Cruise. The workers there were astonished and did very bad job of making her feel comfortable. They put her in the middle, right in the sun, and they were talking to her like she was two. My family was frustrated because my grandma wasn’t stupid. The workers just didn’t get it.

Close to the end of our trip, we went to the bird show at Animal Kingdom. Unfortunately, our family was split up in different sections of the arena. The manager felt bad afterward, so he gave us a private show. Then he took a picture and my grandma’s smile was so huge. When I saw it, I smiled, too!

The day we were driving home, we stopped at the beach in Charleston, SC. Everything was fine and my mom, stepdad, my brothers and I were happy as possible. Until we got the phone call that my grandma’s condition had gotten worse. She only had a few hours to live. The next day, my grandma passed away. She is in a better place now. Every time I get sad about her passing, I remember that smile she had on her face, even though she was in pain. She is one of the biggest reasons I don’t give up on things I’ve started. She’s taught me to never give up and always be positive. I love and miss her. Love you Grandma Paulette!

Thanks to “The Gator Ron girls” Connie, Debbie, and Jessica for joining me for a Monday morning chat. We live tweeted some of it at #GRgogo, but here’s the in-depth scoop.

ALS Connections: I love what you are doing to raise money for ALS research. The big orgs set up events, but you show that each of us, with our individual talents and skills, can make a difference.

Gator Ron’s: That is the great thing about this. This is going to be an ongoing product that brings in money for research. There are a lot of people that suffer with ALS. With other diseases there is a pill or a treatment, but with ALS there is nothing.

ALSC: When did you start the Gator Ron’s business?

GR’s: We started the business in late January of 2012, but didn’t receive the product for sales until August of 2012.

ALSC: How did you get started?

GR’s: Ron’s hobby was creating delicious, unique sauces that he wanted to take to market when he was diagnosed with ALS in 2007. Ron was a businessman. He knew from families asking for these sauces and the Bloody Mary Mix that they would sell.

GR’s: Ron taught his wife Connie how to make his sauces, and made her promise to keep the recipes a secret!

ALSC: Oh no- Ron said to NEVER give away the recipes??

GR’s: Yes, Connie had planned to give them out for the holidays.

ALSC: And, now they are out on store shelves! I think it’s great that you use Ron’s talent for sauces and made an ongoing product that will give over and over to ALS.

Have you had a lot of interviews and press giving you attention?

GR’s: We’ve had a lot of local press, in papers and local news. Nothing national – YET. But we’ve also had some people pick us up in papers and other places and some that we don’t even know how they’ve heard about us. But, that’s what we need,  that bigger recognition for what we are doing, and that will make a difference. We’ll get there!

ALSC: Since August of 2012, you’ve been very well received in both stores and restaurants?

GR’s: Oh, yeah. We have been and we’re very lucky. We have a great product and an important cause and we’ve been working very hard to do this.

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