The Mackney Warriors Blog

At Home in the ALS House

bokeh123 — Fri, 02 Sep 2011 04:16:15 +0000

The future is now for 10 people living with ALS at this state-of-the-art residence overlooking Boston harbor.

Leonard Florence Center for Living

The Leonard Florence Center for Living is a state-of-the-art long-term care facility that’s currently the only Green House in the nation with a residence designed specifically for people with ALS. The ALS residence is named for landscape architect Steve Saling, who has ALS and contributed to the design and construction of the building.

To learn more about this fantastic facility and the inspiring man who helped to make it a reality, click here for the rest of the article.

Major ALS Breakthrough!

bokeh123 — Thu, 25 Aug 2011 23:40:38 +0000

Researchers discover common cause of all forms of ALS

CHICAGO — The underlying disease process of amyotrophic lateral sclerosis (ALS and Lou Gehrig’s disease), a fatal neurodegenerative disease that paralyzes its victims, has long eluded scientists and prevented development of effective therapies. Scientists weren’t even sure all its forms actually converged into a common disease process.

But a new Northwestern Medicine study for the first time has identified a common cause of all forms of ALS.

The basis of the disorder is a broken down protein recycling system in the neurons of the spinal cord and the brain. Optimal functioning of the neurons relies on efficient recycling of the protein building blocks in the cells. In ALS, that recycling system is broken. The cell can’t repair or maintain itself and becomes severely damaged.

The discovery by Northwestern University Feinberg School of Medicine researchers, published in the journal Nature, provides a common target for drug therapy and shows that all types of ALS are, indeed, tributaries, pouring into a common river of cellular incompetence.

Click here for the complete article.

I Will Not Be Quiet: An Interview with ALS Advocate Debra Quinn

bokeh123 — Wed, 24 Aug 2011 20:51:15 +0000

Reposting this wonderful interview with Debra Quinn from the Patients Like Me ALS Forum. The Mackney Warriors are cheering you on Debra!

Debra Quinn’s father, sister, aunt, grandmother and great aunt all passed away from ALS, and in 2009, she was diagnosed with ALS herself. This hereditary form of the disease is called familial ALS (fALS).

After the loss of her younger sister in 2007, Debra decided that she could no longer stay silent.Today, she is “the voice for my children, nieces, nephews and cousins, all of whom have a 50 percent chance of inheriting ALS.”A featured speaker at National ALS Advocacy Day in Washington, DC, Debra is also the spokesperson for Hearts for ALS NY and an active member of the The ALS Association’s Upstate New York Chapter. As a result of her tireless activities, she was recently awarded the New York State Senate Liberty Medal.

After learning about her remarkable story, we reached out to Debra to find out a little more about her. Here is our interview with the indomitable Debra Quinn, one of more than 4,500 PatientsLikeMe members with ALS.

1. How would you describe the impact of familial ALS on your family?

It has truly changed our lives. We always knew it was there, but until you are faced with it yourself, it just doesn’t seem real. We have two grown children who have a 50/50 chance of ALS and it is scary for them to watch the changes in me, knowing that could be them someday. With the onset of ALS early in age, it never leaves their thoughts. I was diagnosed in October of 2009 with early onset symptoms, and since Christmas, I have seen changes coming on faster.

2. Tell us about your ALS advocacy work. How did you get started, and why do you feel called to do it?

I started to give public presentations over a year ago about ALS and what it means to have this type of disease. In order for people to help, they must first understand what it is and how it changes a person’s body over the course of time. I went to DC in May and was able to speak out about familial ALS, which is only 5-10% of all ALS cases.

Teaching the general public that familial ALS happens again and again and again really drums home the challenges that we must face with this inherited disease. Proving that ALS does not skip a generation, we have traced it back to the early 1600s and learned that more than 20 of my father’s ancestors had ALS.

In January of 2011, several supporters of ALS stated a nonprofit organization called Hearts for ALS NY, and I volunteer as their spokesperson. My advocacy role comes straight from my heart. I speak to anyone who will listen as we have a unique story that must be shared. My goal is to speak nationally about this disease and not stop until we have a cure on the table.

When you come from a familial ALS family, it just keeps attacking again and again. Watching my little sister die of ALS and not having the help we needed to take care of her, I refuse to be quiet about this disease as it needs to be talked about and shared with others. So many feel that they must lay down and die once they hear the three-letter word, ALS, and that is not true today with all the assistive equipment that is out there for people with ALS.

3. You received the New York State Senate Liberty Medal in June 2011. What does this recognition mean to you?

I was really honored to receive the New York State Senate Liberty Medal. This is for all the people who have supported me and joined me in the fight against ALS. I’d also like to thank Senator Catharine Young for her support of the ALS community. ALS seems to be the secret disease that has no outspoken person to really tell the world exactly what ALS is and how to live with this horrific disease each day. I’m proud to be raising awareness of this disease and be the voice of others. I will never, ever give up.

Remembering Rich Today and Always…

bokeh123 — Sun, 17 Apr 2011 18:05:52 +0000

It is one year ago today that we lost Rich. Not a day goes by that he is not in our collective thoughts. I know that I speak for many when I say, “I love and miss you Rich. You’re in my heart today and always.”

Until we meet again…
Liz

Familial ALS Webinar Now Available Online

bokeh123 — Tue, 22 Mar 2011 16:55:22 +0000

A “Familial ALS” webinar was hosted by the ALS Therapy Development Institute on March 16, 2011 at 7PM (EDT). This month’s webinar featured Dr. Fernando Vieira from ALS TDI and Dr. Michael Benatar from the University of Miami’s Miller School of Medicine. Together they walked us through the known genetics of ALS, how that information is being used in the lab today to identify “pathways” as well as to test potential therapeutics, and current clinical investigations relevant to fALS families.

A copy of this webinar, which lasted about 90 minutes, is now available online at: http://als.net/Podcasts/Default.aspx. You may also download it as a podcast in iTunes. The next webinar will be on April 6^th from 1-3PM.

Embracing the Outdoors ALS and All

bokeh123 — Tue, 23 Nov 2010 19:26:23 +0000

For someone with ALS, Martin Wallem sure manages to do a lot of hiking — not to mention deep sea fishing and snow skiing. All with a little help from his friends and some innovative sports equipment.

Wallem, 40, received an ALS diagnosis in 2002, although his symptoms began a year before. He currently is able to move his eyes and some facial muscles, as well as grind his teeth. He communicates mainly via a low-tech alphabet board, in which he focuses on letters to spell out words.

ALS has not stopped Wallem, his wife Cara or 7-year-old son “Little Martin” from enjoying a wide variety of active sports. Cara says that prior to ALS, Martin was an avid outdoorsman who lived life on the edge.

“Hunting, fishing, scuba diving, sailing, backcountry snowboarding and skiing, ice climbing, bungee jumping, whitewater canoeing, you name it,” she says.

“Martin didn’t hesitate to scuba dive with sharks! He was and is a thrill seeker with a passion for the outdoors.”

Click here to read about how Martin does it! What an inspiring man!

Frequently Asked Questions About the New ALS Disease Registry

bokeh123 — Tue, 23 Nov 2010 19:21:32 +0000

In order to help doctors and scientists find treatments for ALS, the Agency for Toxic Substances and Disease Registry (ATSDR) has developed a national registry to collect information from people living with the disease.

Click here for a bit of background on the new registry, which opened in October.

What’s a ‘Meaningful’ Change for Those with ALS?

bokeh123 — Tue, 23 Nov 2010 19:18:31 +0000

Article Highlights:

A study being conducted through the MDA ALS Clinical Research Network will probe the nature of changes that people with ALS and their caregivers consider meaningful.
Changes people with ALS consider meaningful may be different from statistically significant differences and are important for drug developers and regulators to understand.

Click here for the entire article.

Mysterious Cells May Play Role In ALS

bokeh123 — Tue, 23 Nov 2010 19:15:12 +0000

By tracking the fate of a group of immature cells that persist in the adult brain and spinal cord, Johns Hopkins researchers discovered in mice that these cells undergo dramatic changes in ALS, also known as Lou Gehrig’s disease.

Click here for the entire article.

The ALS Association and Research

bokeh123 — Tue, 23 Nov 2010 19:10:46 +0000

The ALS Association has committed more than $55 million to find effective treatments and a cure for Lou Gehrig’s Disease. Our global research effort has helped increase the number of scientists working on ALS, advanced new discoveries and treatments, and has shed light on the complex genetic and environmental factors involved in ALS.

The ALS Association has made significant research milestones in the fight against ALS, including:

The groundbreaking discovery of the ALS gene, SOD1, responsible for 20 percent of all inherited ALS cases.
Discovery of ALS6 in 2009, a new gene responsible for about 5% of all inherited ALS cases.
The first clinical trial of ISIS-SOD1, a new drug that specifically targets the SOD1 gene.