Global Wealth Partners treats SCI survivors to incredible experience at Laguna Seca

Our friend and longtime supporter, Brian King of Global Wealth Partners (GWP) sure knows how to spoil friends of NorCal SCI as he once again opened his firm’s private chalet at this past weekend’s Rolex Monterey Motorsports Reunion at Laguna Seca to a group of individuals with spinal cord injuries who were treated to an incredible venue to see racing, non-stop servings of food and drinks and an opportunity to spend a great day appreciating motorsports. Where else can you see and hear historic race cars at full speed doing what they were originally intended to do … and that’s race. This annual event is a celebration of motorsport history that brings approximately 550 race cars together in one open paddock for everyone to enjoy.

We arguably had the best venue in the whole place, overlooking the stretch of the track where the cars pick up their highest speed before coming to a tight turn where one wrong move can result in a rollover. It was quite a scene watching 1927 built race cars out there and, of course, the latest prototypes also did their part to steal the show. Overall, a beautiful day between about 10 wheelchair users who attended the event, thanks to GWP and Brian King for the VIP treatment we all received.

Better access for the disabled traveler: are airlines finally getting the message?

The world’s airlines have adopted a resolution that puts improving travel for disabled passengers at the top of their to-do list. At the International Air Transport Association annual meeting in June, the industry trade group committed to “ensuring that passengers with disabilities have access to safe, reliable and dignified travel.” In the resolution, the IATA recognized that damage to mobility devices is a major concern for disabled passengers. It is considering the development of industry-wide standard and practices for handling and loading of mobility devices.

While the resolution is largely devoid of specifics, accessible travel watchers are pleased that airlines are finally starting to recognize that disabled passengers represent a major and increasingly valuable customer base. Thanks to our friends at New Mobility magazine, you can read more about it HERE.

Why is it so hard to find accessible seating at concerts and shows?

Perhaps one way to get accessible seat is to buy general admission and crowd-surf your way.

It is one of the most baffling and frustrating challenges for a wheelchair user and it involves figuring out how a venue that seats 18,000 people could only have 30 wheelchair accessible seats. Or, better yet, you’re online or on the phone right at the time ticket sales begin and as soon as it’s your turn, sorry, all wheelchair accessible seats are sold out. UGH!

Our friends at Push Living attempted to answer that question in this article featured recently and while it may not solve this problem, it might give you some comfort on how to try and address it with your local venues.

SCI Consortium survey seeks to assess needs of the SCI population

The North American Spinal Cord Injury Consortium (NASCIC) is a non-profit organization that brings about unified achievements in research, care, cure, and policy by supporting collaborative efforts across the spinal cord injury community. They are conducting a survey to gain input from our community living with spinal cord injury (SCI) on what is most important to help direct the activities of NASCIC and help prioritize their efforts.

This kind of information not only helps NASCIC as a whole, but it can also help various member organizations and individuals with their focused efforts. It is important that they get as large of a response to the survey as possible from the SCI community about their reality and what they want NASCIC to focus on as they try to make changes for all of us.

To participate in this survey, you must have a spinal cord injury or be a family member or caregiver of someone living with SCI and be at least 18 years old. It will take you between 5 and 10 minutes to provide your input. Start the survey HERE.

New information emerges about upcoming umbilical cord blood stem cell clinical trials

Dr. Wise Young

Back in April, NorCal SCI sponsored an open house featuring Dr. Wise Young, a renowned researcher at Rutgers University in New Jersey who has been pursuing developing potential ways to recover function in individuals with a chronic spinal cord injury.  He has been approved by the FDA to conduct a clinical trial in the U.S. following a highly successful trial in China.  You can read about this trial HERE. Though we reported on his work and presentation at the open house, many questions remained unanswered for the SCI community, including additional explanation and clarification that his work needed.

At a recent open house held at Rutgers, Dr. Young and a couple of colleagues shared some updates and changes made to the trials but more importantly, the Q&A part of the meeting was more revealing.  You can read all about it HERE.

TO APPLY FOR ENROLLMENT IN THIS CLINICAL TRIAL: The FDA has granted approval for this clinical trial, and later this year, they will begin a trial with 27 subjects. In order to qualify for this trial, you must have a complete injury between C5 and T11, be injured more than 1 year, 18-64 yrs old. Neurosurgeons are reluctant to inject above C5 because of the phrenic nucleus which if damaged, it could result in diaphragm paralysis preventing the individual from being able to regulate breathing on his or her own. Dr Young plans to have a separate trial for high quads after this one. There is no cost to participate in a clinical trial, but if selected, you would have to cover the cost of lodging and transportation in NJ for 6 months. Send e-mail to Jim Bennett at jimbenn@rutgers.edu who will add you to his list to be alerted when recruitment begins in a month or two.

Great opportunity to help make Airbnb's platform more accessible while earning some cash

Airbnb’s In-Home Accessibility (IHA) team is recruiting participants who are living with a disability or who have in-depth knowledge of accessibility for a pilot study on a new tool currently in development.

The IHA team is dedicated to making Airbnb the most trusted travel platform for travelers with accessibility needs. One of their priorities is ensuring the accuracy of accessibility information in listings, so their team is developing an evaluation tool that will enable paid auditors from the external community to review photos provided by hosts, verify whether or not the photo accurately portrays the existence of an accessibility feature, and provide feedback for the host on how to convey any missing information. Airbnb believes enlisting the help of experts is necessary to improve the reliability of the accessibility search filters for all listings across their platform.

Participants will audit accessibility photos using the evaluation tool, so you must have access to a computer and the internet. Additionally, all auditing will be done remotely. Auditors will be given a batch of photos to evaluate within three weeks. The estimated time commitment is 5-10 hours a week, but auditors are welcome to work at their own pace before the pilot end date. Compensation is $20/hour and it is anticipated that the total amount of time required to complete a batch is 15 hours.

To be considered for the study, please complete THIS FORM. Upon receiving a response, an IHA team member will send a brief accessibility evaluation exercise and set up an interview time before confirming participation.

Researchers restore complete respiratory muscle function in those with high-level SCI

VA doctors are among a team of researchers at the Cleveland Functional Electrical Stimulation Center restoring respiratory muscle function to Veterans and individuals with spinal cord injury (SCI). Doctors Anthony DiMarco and Krzysztof Kowalski developed the first method in the world that can activate expiratory muscles (abdominal and lower rib cage muscles), using minimally invasive techniques to produce an effective cough.

This system to restore cough can be used safely and effectively in conjunction with a diaphragm pacing system to restore breathing. Individuals with cervical level SCI that are fully dependent on a ventilator can often use an alternative method called diaphragm pacing. This method provides a more natural form of breathing by stimulating the diaphragm.

You can read more about it HERE.

NorCal SCI's Durable Medical Equipment storage brimming with free donated goods

Nora couldn’t believe how lightweight the brand new TiLite wheelchair was. Christopher was stoked he got a new hand/leg exercise cycle. Eve scored a stair lift system that normally goes for $12,000 and provided her with the freedom to go upstairs in her 2-story home. Cameron couldn’t believe he got an EasyStand standing frame in such an excellent condition. The common themes across all these outcomes? The generosity of the donors of the equipment and our ability to store and process these equipment at our storage facility made possible by our financial donors who allowed us to fund the $3,500 a year in rent.

And so, in two months since we secured our storage facility, it is full of some incredible goods that include new top-of-the-line power wheelchairs, shower benches, multiple manual wheelchairs and much more. Already, some $90,000 worth of goods have been distributed to individuals who could benefit from them and we’re just happy to play the middle man in this process.

If you have durable medical equipment that’s in good condition, consider donating it to us. If you have a need for such equipment, keep checking the site as new items arrive frequently. You can find everything HERE.

BORP launches indoor/outdoor rowing clinics and ballroom dancing workshop

Berkeley-based Bay Area Outreach & Recreation Program (BORP) is offering a couple of new activities, one much different than the other. How about ballroom dancing? Not physically intensive enough? How about indoor or outdoor rowing? Let’s get you the details.

Adapted Ballroom Dance for People with Spinal Cord Injury and partner. This will be a free 2-hour workshop as an introduction to ballroom dancing. With its countless styles and repertoire of popular music, ballroom dance is an activity enjoyed by couples around the world, both socially and competitively. In this introductory class, you will learn a version of the Rumba, a slow and sensuous dance with origins in Cuba, adapted for a wheelchair user and a standing partner. The class will be taught by American DanceWheels Foundation certified instructor, Derrick Williamson. A lifelong wheelchair user, Derrick has seven years of experience teaching ballroom dance. He performed in the closing ceremonies of the 2015 PanAmerican games and is a regular guest lecturer in the Department of Dance at CSUEB and in the Department of Kinesiology at SJSU. Space is limited, so sign up now by emailing bonnie@borp.org.
When: Sept 29, Noon-2 p.m. at the Ed Roberts Campus, Berkeley

INDOOR/OUTDOOR ROWING: Rowing is a great full body strengthening, core, and cardio workout. The on-land studio classes in August will teach you proper technique that will help improve your experience for the on-water rowing in September. The studio classes are not required for joining the water rowing but will improve the experience and help you get more out of being on the water. Paralympic rowing divisions are PR1 (arms and shoulders), PR2 (arms and torso), and PR3 (arms, torso, and legs). The classes will help you figure out which division you’re in. Kerry Kingdon, a BORP participant, is the instructor and rows in the PR2 division and currently holds first place in the USA. She’s been rowing on and off the water for nearly two years, mostly in a single boat, but has also raced double.

WHEN:
Studio : Tue Aug 20th 4-5 PM, Tue Aug 27th 4-5 PM, Thur Aug 29th 6-7 PM
Water : Thur Sept 12th Noon-2 PM, Sat. Sept 14th 1-3 PM

WHERE: Studio classes at BORP’s Fitness Center, Ed Roberts Campus 3075 Adeline Street in Berkeley.
Water rowing at BAIR Island Aquatic Center, Redwood City.. Free transportation to Redwood City on the BORP bus is available.

Two seating options available for studio classes: “roll-in” or lateral transfer to a standard or static (adapted) seat. Please indicate your seating needs during registration. Pre-registration is required. Contact ariel@borp.org or call 510/ 225-7039. Class size is very limited. Register for one or all three!

*COST: $11 per class, seniors 55 and older & veterans, $8 per class. If you are a person with a spinal cord injury, inquire about the Neilsen Pass, a subsidized pass specifically for people with SCI. Contact ariel@borp.org or call 510- 225-7039.

Sonoma-Marin SCI Support Group tackles Emergency Preparedness at Aug. 19 meeting

With the memories of the wildfires that devastated Northern California communities still fresh on everyone’s mind, the Sonoma-Marin SCI Support Group is hosting Sam Wallis, Emergency Coordinator for Sonoma County Fire & Emergency Services, who will lead a presentation on how the disability community in particular should prepare for emergencies such as fires, earthquakes or floods.

The meeting will be held on Mon., Aug. 19th from 4-5:30 p.m. at Sequoia Senior Solutions, 1372 N. McDowell Blvd., Suite S, Petaluma. Bring your questions and concerns about this critical topic. For more information, please contact SonomaMarinSCI@gmail.com.