Tessa Shull is a personal assistant to two toddlers, a wife, and a social media specialist/writer who resides in the heart of America, Kansas City. Her mother was diagnosed with ALS in 2015, and since then, it’s been important to find a way to continue making a difference, for both her and her mother, despite the disease. You can check out more of Tessa’s writing on her family and lifestyle blog, homemadeexperience.com.
I put it off as long as I could. I buried myself in friends’ lives, picked at frivolous problems and attended an excessive amount of events. I traveled for three weeks straight. I caught up on every T.V. show I’ve ever enjoyed. I cleaned and organized my entire home. And I sorted through every piece of clothing my children own, which took a full three days in and of itself.
Aquinnah Pharmaceuticals, in partnership with researchers at Boston University, are targeting stress granules to design new therapies for amyotrophic lateral sclerosis (ALS). The goal is to advance promising new drug leads aimed at providing disease-modifying treatments for patients that will slow the clinical progression of this devastating disease.
One of the cornerstones of The ALS Association’s global research program is to fund milestone-driven projects to push research efforts more rapidly toward effective treatments and cures. The Association successfully accomplishes this is through fostering partnerships between academic laboratories and industry, and then funding them through The Association’s TREAT ALS™ Drug Development Contract program grants.
One great example of this type of collaboration is a partnership between Dr. Ben Wolozin, Professor of Pharmacology and Neurology at Boston University School of Medicine and Dr. Glenn Larsen, CEO of Aquinnah Pharmaceuticals based out of Cambridge, Mass. Dr. Wolozin also serves as Aquinnah Pharmaceutical’s Chief Scientific Officer.
Mallory Marrs is a freshman at Hanover College, located in southern Indiana. She is very involved in activities such as Dance Marathon, cross country, and she is the Editor in Chief for the Odyssey Online. She wrote this article in memory of her uncle, who passed away in 2006 after his battle with ALS, and is happy she could honor him in this way.
I decided to do a quick visit home overnight the other day, and I was packing up last-minute items. I was looking over my dresser to make sure I didn’t miss anything, then something red caught my eye. It took me a minute to realize what it was. It was my ALS Association bracelet, with the phrase “never give up” on it. I had to stop for a minute and hold it. I couldn’t think of the last time I wore it or seen it, but it popped up on my dresser as I was packing up to leave for school for a few weeks.
I am a big believer in signs; how objects are placed into our lives at a certain time for a certain reason. I fully believe this bracelet with my motto was placed on my dresser at this time for a reason. The last few weeks of college have been a challenge. I was faced with unexpected disappointments, stress from keeping up with new schoolwork, and the pressure to live up to expectations. While usually, I thrive under these circumstances, the past few weeks had not lived up to my personal expectations and had me feeling like my usual self.
William Gunn is currently the Director of Music at Plymouth Regional High School in New Hampshire where he directs the Concert Band, Jazz Band, Concert Choir, and Chamber Singers. William is a free-lance pianist and also sings regularly with the New Hampshire Master Chorale.
It was almost a year ago that I fell in love with Jane Babin’s poetry. Her son, a former student of mine, had given me her book Pearls in the Pond a few months after she had passed away after an eleven year battle with ALS (Lou Gehrig’s disease). I found myself immersed in her poems, lectures, thoughts on life and mortality, and coping with her disease.
In January, I commissioned another former student, a freshman music composition major at Ithaca College, to write a choral piece set to one of Jane’s poem. Her son was in chorus and band for his entire high school career, so I couldn’t think of a better way to honor her words by setting it to music. Jane’s sisters would often tell me that she loved watching videos of him in the concerts. In conjunction with this commission, the entire choir has teamed with The ALS Association of Northern New England to raise money and awareness for ALS throughout the semester.
When I was diagnosed with ALS, I was hoping to see my sons graduate from high school. As it turns out, I’ve been blessed to have seen them graduate from high school and college.
I know I’m one of the lucky ones. ALS has progressed fairly slowly in me and I don’t take that for granted. From day one of learning I have this disease, I’ve done what I can to advance ALS research and the discovery of new treatments.
All of us living with ALS have to have hope: hope for a treatment and hope for a cure. That’s why I’m excited about a new report that came out today from the Pharmaceutical Research and Manufacturers of America (PhRMA) and The ALS Association, “Medicines in Development for Rare Diseases.”
This new report, which also shares my story, finds that America’s biopharmaceutical research companies are currently developing more than 560 medicines for patients with rare diseases, 38 of which are for people with neurological disorders, including ALS.
Among the new therapies in development for ALS is antisense technology against SOD1. Antisense technology is an important step toward helping patients and their families manage ALS and something The ALS Association has supported since 2003.
There are about 7,000 known rare diseases that affect fewer than 200,000 people in the U.S. every year. This report gives me hope that industry is focusing on these diseases, including ALS, more than ever before.
Meet Dr. James Connor, an ALS researcher who leads a team at Penn State Hershey Medical Center in Hershey, PA that recently received an ALS Association Investigator-Initiated grant to move his exciting research forward. The ALS Association spoke with Dr. Connor about his investigations into how a therapeutic iron solution is potentially protective in ALS and how collaboration at Hershey bridges the lab and the ALS clinic.
What has the support from The ALS Association meant to you and how has your Investigator-Initiated grant pushed your project forward?
The support helps us on so many levels. It excites us, invigorates us and validates us. But at same time, there is a strong sense of responsibility because this is money from someone that was most likely touched by this devastating disease. That level of trust means a lot and heightens our work. It is a privilege to work on the brain and ALS and to have some ideas that could potentially help someone that is suffering. When we are working 60 hours a week and are tired and working on a weekend to do an experiment, knowing where that award money came from to do our work invigorates us.
Do you have a message for the donors that helped make this project possible?
We always tell our donors that our job is to provide the hope. When a person goes into the doctor’s office and gets the devastating diagnosis, clinicians are obviously wonderful working with the person to deal with the disease. We want to be the element of hope to come in and say that our study is working and hopefully this will be relevant and helpful to the patient. In return, donors are instilling their hope in us, which is a tremendous gift and honor. Also, we have lots of great ideas, but without the funding, they are just ideas. So donors are part of our implementation team. Donors join our team! When we receive a grant, we get excited to go work to do our experiments. Otherwise, people get frustrated because they cannot afford to do the experiments they want to do.
Since 1996, the Sheila Essey Award for ALS Research has been presented by Dick Essey at the American Academy of Neurology Annual Meeting, in memory of his wife Sheila, who battled ALS for 10 years and passed in 2004. This year, the award was presented to Ammar Al-Chalabi, Ph.D., FRCP, DipStat from King’s College London. Find out how Dr. Al-Chalabi’s work is driving progress in ALS research forward.
This year, The ALS Association and the American Academy of Neurology (AAN) were very pleased to honor Dr. Ammar Al-Chalabi with the Sheila Essey Award for ALS Research for his major contributions to the understanding of ALS and the search for new therapies to treat the disease. Dr. Al-Chalabi was presented the 2016 Sheila Essey Award by Dick Essey at the 68th AAN Annual Meeting in Vancouver, B.C. on April 20, 2016. The $50,000 prize was given to fuel his promising ALS research projects and to fund talented young scientists on his research team.
Dr. Al-Chalabi is currently Professor of Neurology and Complex Disease Genetics at King’s College London and Director of King’s MND Care and Research Center. He has made significant contributions to the ALS field. Dr. Al-Chalabi helped identify many known genetic causes of ALS, including C9orf72; developed the ALSoD database, an important tool for researchers funded by The ALS Association, MNDA UK and Therapy Alliance; and has made significant contributions to understanding disease staging, which impacts ALS care and clinical trial design. For more information regarding his illustrious research career click here.
“We are in a time of great hope in ALS therapy development. The efforts highlighted here are poised to accelerate progress in clinical trials and to bring new treatments to people living with ALS.” – Barb Newhouse, President and CEO, The ALS Association
Collaboration is a cornerstone of The ALS Association’s global research program. That’s why The Association hosts an annual ALS Drug Company Working Group that brings together representatives from pharmaceutical companies and academia to discuss how to move ALS research and therapy development forward.
This year, the Working Group was held at the 68th Annual American Academy of Neurology (AAN) Meeting in Vancouver in April. Below are some of the highlights from the meeting.
Every May, The ALS Association joins the ALS community in celebrating ALS Awareness Month, a time to bring attention and understanding to this disease. As part of this year’s Awareness Month, we are happy to be launching the ALS Association Blog!
We know that people living with ALS – including family members, caregivers, and friends – form a tight-knit community. Because of this, we want to make our blog a place for you to share your stories and talk with each other. Posts will include stories and creative works submitted by people in the ALS community, and visitors to the blog will be able to leave comments and share their favorite articles on social media.
The blog will also be a place to find the latest news, information, and issues related to ALS, and will offer a look at the progress of The Association’s initiatives in research, advocacy, and care services.