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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by Melissa Carey

ALS Connections chatted with Prize4Life recently to gain a better understanding of the PRO-ACT database. We are grateful for their time and learned much while connecting with them. Thank you Prize4Life!

The Pooled Resource Open-access ALS Clinical Trials (PRO-ACT) database is NOT a database for patients to register or personally add information. The PRO-ACT database is NOT in competition with the CDC registry. The PRO-ACT database is NOT a closed set of data only available to a few researchers. And, the PRO-ACT database is NOT a small project by any means.

The PRO-ACT database houses the largest ALS clinical trials dataset ever created. With extensive data on 8500+ ALS patients (ten times the number of ALS patient records previously available), it is a powerful tool for biomedical researchers, statisticians, clinicians, or anyone else interested in Big Data.

PRO-ACT is a tool for interested parties and individuals with the relevant quantitative expertise and an important research question, who can register on the site (www.ALSDatabase.org) to access the information contained in the database.  The data within PRO-ACT comes from completed Phase 2 and Phase 3 ALS clinical trials and includes both placebo arm and treatment arm information.  The information is fully de-identified and limited to clinical trial data from each patient, not genetic data.  Patients have no privacy concerns because you can’t extract whose information is contained.

PRO-ACT merges data from existing public and private clinical trials, generating an invaluable resource to help the design of future ALS clinical trials and saving data that would otherwise be lost or stored away inaccessible in a file somewhere, unavailable for further review. Thus far, PRO-ACT contains comprehensive combined data from 17 completed ALS clinical trials,

Unlike the CDC’s ALS registry, which is designed to collect a few key pieces of information about all current ALS patients in the US, PRO-ACT contains detailed information about patients around the world who participated in a set of specific ALS clinical trials. The open-access nature of PRO-ACT contrasts with the silo approach, which many patients and researchers have identified as an issue holding back ALS research.

The premise of PRO-ACT builds on the concepts of big data and crowdsourcing. The objective is to provide ALS researchers and other computationally trained people around the world access to sufficient quantities of validated data. The idea is to encourage really smart people with great skills to use PRO-ACT and apply their knowledge to develop new ways to look at the data.  ANYONE who knows how to crunch numbers and mine data is invited to discover something new about the disease that might help advance Prize4Life’s mission to accelerate treatments and a cure for ALS.

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