July 2017 Meeting
Nancy Cai, Coordinator of Clinical Trials at UCSF, delivered a very informative presentation at our July 8th NCASG meeting. She works closely with Dr. Alexander Nelson and Dr. Michael Gerchwind at UCSF. In working with clinical trials she stated that there are four main questions that are used: (1) Is the new drug or treatment safe? (2) Does the new drug or treatment do what it is supposed to do? (3) Is it better than the current treatment? and (4) Who benefits from the new compound?
The major emphasis of her presentation was the work being done on the drug Riluzole. The clinical trial mentioned was for BHV-4157. This is a prodrug of Riluzole, which is available on the market but may affect the liver. Through this clinical trial, they’re trying to see if the new drug (similar to Riluzole, but has different added compounds/chemicals) will be safer.
It is a drug being developed to help with movement and balance issues. It may help slow the progression of Ataxia. They have been working for six years to develop this safer drug that will not cause liver damage and absorbs better in the body. Riluzole should help with all SCA’s. It appears to be a safe drug and does not seem to have any bad side effects. If this clinical trial works, the results should be known later in 2017. Before approval a lot of analyses is done. The SARA test for Ataxia patients is done measuring effects on physical movements. Lab data of Ataxia patients is taken into account. The FDA comes to UCSF and does its questioning. By the end of 2018 results will show if this is a drug for the market.
If members have questions they can contact Nancy Cai (firstname.lastname@example.org).
Also, here is the clinic’s information:
- Main clinic at the Parnassus Campus: Parkinson’s Disease and Movement Disorders
- Phone: 353.2273
- Hours: M-F 8AM-5PM
- Our clinic at the Mission Bay Campus: Memory and Aging Center (MAC) Clinic
- To have a physician refer you to the MAC clinic here is the process:
- Phone: 353.2057
- Hours: HD/Ataxia clinic is every other Thursday (call in to make an appointment)
- Currently, we are booked until November, but you can try nonetheless!
- Clinical trials:
April 2017 Meeting Highlights
by Shirley Hanks
Dr. Laurice Yang from Stanford spoke at the April meeting. She covered the following topics: the science behind the beneSicial effects of exercise
the risk factors for falls (physical, behavioral, medications) physical therapy vs. occupational therapy (different perspectives and approaches)
Dr. Yang and team are working on the hurdles of (1) Gene Silencing, (2) Protein Tagging and (3) Medication developments
She said it is difficult (a) to get particular medication to the brain (b) to get medications into specific cells (c) to target side effect problems. It is a 5 to 10 year process to get FDA to approve medications.
Stanford has an Ataxia Clinic on the 1st and 3rd Friday morning of each month. You need to make an appointment to be part of the Ataxia Clinic on either day by calling, Stanford Ataxia Clinic at 650-723-6469
January 2017 Meeting
by Shirley Hanks
Kevin McCormick of California Institute of Regenerative Medicine (CIRM), gave an informative presentation about stem cell therapy research. Here are some of the highlights of his presentation.
•CIRM was created 12 years ago as a result of a CA Bill that gave funding for research in stem cell therapy. There is stem cell therapy research being done by CIRM for Ataxia (about 14 million dollars funded), Parkinson's, ALS and Huntington's disease.
•Some therapies that come out of stem cell research involve (1) transplanting the cells themselves. (2) drugs that were discovered through modeling diseases in a petri dish and (3) diagnostics that allow doctors to diagnose and treat diseases more effectively or through technologies that open up whole new Oields of research.
•Induced pluripotent cells, or IPS cells, represent another type of cell that could be used for stem cell research. IPS cells are adult cells (usually skin cells) that scientists genetically "reprogram" to appear like embryonic stem cells.
The technology used to generate human IPS cells is very promising. However IPS cell technology is very new and scientists are looking into whether those cells have the same potential as human embryonic stem cells and whether the cells are safe for transplantation. Many CIRM funded researchers are working to Oind better ways of creating IPS cells that are both safe and effective.
CIRM was created to fund the most promising stem cell research. One of the problems that they are facing is that the Food and Drug Administration (FDA) regulatory process is impeding the approval of stem cell therapies and delaying the time it takes for them to reach patients.
CIRM has set up a program called "CIRM Stem Cell Champion". They are asking the general public to join them in their efforts to bring safe approved stem cell treatments to patients faster. You can sign up on their website to be part of this effort.http://www.cirm.ca.gov
October 2016 Meeting
by Shirley Hanks
Rick Smith the representative from BORP provided ou rmembers an enthusiastic and educational presentation at the October meeting.
He introduced how BORP offers opportunities for people with disabilities to enjoy outdoor activities, safely, using their adaptive bikes. BORP is 40 years old and is located in Berkeley, as well as throughout the United States. You can take BART to arrive right at their facilities. When you arrive you Hill out a short form and can make a donation, if you choose. They will Hit you to a bike. You should bring your own helmet. You have a choice of hand bikes, foot bikes, or tandem with a pilot. Once on your bike, they make sure you are comfortable riding it. Then, you can ride on the easy trails around Aquatic Park. A friend or family member can ride with you by renting a bike nearby or bringing their own. If you have trouble with the bike on the trail, BORP will come to assist you.There are planned Outdoor Group Adventures throughout CA. These trips are day trips and transportation is provided. BORP can, also arrange social events. BORP Fitness offers Yoga classes and Adaptive Fitness classes ($8.00 per class). Greg Melano can organize group rides. As Rick said, "BORP changes lives!"Please note, due to weather, they are closed 12/16-3/1
Contact BORP at 510-948-2930 for information.
Lafayette – July 2016
by Shirley Hanks
We were very fortunate to have Prof. Rich Ivry and Assaf Breska, a post doctoral researcher in the lab, join us for our July meeting to present about, "The Cerebellum and Prediction: Implications of Motor Control and Cognition".
￼Here are a few highlights of his presentation: Prof Ivry presented research about the role of the cerebellum in the control of predictive movement. One of the key problems in ataxia is a disruption of predictive control. People with ataxia have difficulty anticipating the outcome of their movements and thus either produce errors or have to slow down, generating accurate predictions and thus either produce errors in their movements or have to slow down, relying on feedback to coordinate their actions.
Recent work has shown that the cerebellum may contribute to memory, attention, and even language comprehension. He described recent work in the lab that looks at how the cerebellum and cortex interact when we learn to make novel movements, ones that require strategic planning.
If you would like to participate in the lab research studies, you can contact Dr. Ivry using the information below:
Professor of Psychology and Neuroscience
Department of Psychology
3210 Tolman Hall
University of California
Berkeley, CA 94720-1650
510-642-5292 (message) http://ivrylab.berkeley.edu/
Lafayette – April 2016
by Jen Buelher
It was a bittersweet meeting in April. Joanne Loveland, was honored for all she had accomplished as our group leader, which includes setting up Local Area Contact Groups, establishing a quarterly newsletter, and deciding to launch a website for the group. She is moving to Arizona to be close to her daughter and grandchildren.
Fernando Wu shared a presentation about new research and grants. He and Rocio attended the National Ataxia Foundation Conference in Orlando, Florida and shared highlights.
Jen Buehler presented a composite of "The Spring 2015 Generations": including the 20 Grants awarded this year especially the ones affecting our support group. Jen also stressed the importance of joining the NAF. Membership costs $35 a year which includes a copy of Generations four times a year. Sign up online at ataxia.org.
Jen also introduced Alayna Liptak from UCSF who announced a Research Study on Diseases of the Brain Affecting Movement and Balance. For more info, call Alayna at 415.502.7640.
We are in a “leader dilemma”, and in need of a new permanent leader. Joanne suggested a non-ataxic family member or partner of a member. For the next year or so, we are doing leadership sharing. Fernando has agreed to lead the meetings, and Brian, Shirley, Jen, Rocio, Rosemary, Dawn and others have agreed to assume supporting roles during this flux.
Fremont – Sept Walk n’ Roll 2015
by Jen Buehler
Wow! We did very well with our Walk n’ Roll on Sunday, October 4, 2015 at East Bay Parks, Quarry Lakes in Fremont. The event itself attracted about 50 people, many of whom were families and friends. We wish more could have attended, but it was good to see those who were able to be there and even some new members.
John Beacom honored his wife Bev, who passed this past year and for whom we had dedicated our page on NAF, by being a part of the event. Also, Bill Sweeney, the president of the NAF, attended. He spoke and told us how important our support for Ataxia can be.
A total of $15,000 + was raised by our members in donations for NAF, and monies generated from our silent auction, game center and raffle at the Walk n’ Roll.
$13,000 of the total was raised by individuals, who deserve recognition for having their own fundraising page on http://ataxia.donorpages.com/2015NCAWnR/stats/. Top fundraisers include: Brian and Teresa Bredberg, Brian Wong, Joanne Loveland, Rocio Wu, Jen Buehler, Debbie and King Omictin, Kerstin Safari, Season Harris, and Shirley Hanks.
As chairperson of the event, I would like to extend special thanks to members: Joanne Loveland, Shirley and Barry Hanks, Brian Wong, Dawn Ngo, and Alan Acacia. Without your help we could not have pulled it off with such Sinesse.
Bring your ideas to the January meeting to discuss alternative ways to generate $15,000 to $20,000 to donate to NAF. We believe hosting a Walk n’ Roll is too taxing and getting beyond the individual capabilities for the majority of our members.
Lafayette – Jan 2015
Turnout for the meeting was the highest in several years—34 people.
The program presentation by our own members–“How to Access the Internet”— was a big draw. Jen Buehler, with help from Jeanie Smith-Ball and Rocy Wu, focused on websites most useful to use, such as NAF’s site, ataxia.org, which has fact sheets, research studies and chat rooms, and local sites, such as Ataxia Friends California, a new site founded by SG members.
The business meeting focused on introducing our new Local Area Contact program. Shirley Hanks, Area Contact Coordinator, emphasized her commitment to assist and be available to contact persons. Most members felt OK about the newsletter’s longer length, appreciated Joanne’s News You Can Use, and requested future articles on helpful devices and utensils, as well as on medical research discoveries.
Lafayette – Oct 2014
25 people attended our meeting in October, including some new members. It was successful on several different levels.
The main event was a Living-with-Ataxia discussion. We talked about how we can lead rewarding lives even though we have ataxia. It was a special time to chat with one another about the emotional and practical realities, the highs and lows, and how we manage to survive.
There was one group for women with ataxia, one for men, and a third for family and
caretakers. Living-with-Ataxia discussions will be a focus in many future meetings. m
--Since 40% of our members live over a 100 mile round-trip from our meetings, we have made the creation of Local Area Groups a priority. By our October meeting a number of members from various locations had already contacted Shirley Hanks, our local group coordinator. Several more signed up at the meeting.
--We formed a committee to explore using Facebook and other social media as a way for people to discover and connect with each other.
At the end of the meeting we posed for photographs, one of which will be published in the winter issue of the National Ataxia Foundation’s publication, Generations.
Lafayette – July 2014
Neurologist Dr. Alexandra Nelson and Research Coordinator Joe Winer from the UCSF Memory and Aging Center discussed two research studies that they are currently running.
The first is a study that focuses on SCA types 1, 2, 3, and 6.
go to: https://clinicaltrials.gov/ct2/show/NCT01060371?term=ataxia&rank=2
For more info
is to bring together a group of experts in the field of SCA to learn more about the disease.
The purpose of this research study
is a nationwide study with 800 patients expected to participate all over the USA.
The second study is a collaboration with UCLA Neurogenetics Research Program. The purpose is to find more genes involved in spinocerebellar degeneration. Participation in this study involves one visit. Those with a personal or family history of spinocerebellar degeneration are eligible.