Life Goes On Foundation is planning what it dubs as a team-building adventure to Great America in Santa Clara on Sat., May 27th and is inviting those with SCI and their friends or families along.
Their goal is to get at least 15 participants which would then qualify everyone for the park’s $32 passes. This is a great opportunity to meet new friends and have fun but the organizers need you to RSVP as soon as possible in order to secure these $32 tickets (which require a minimum of 15 participants).
You can RSVP at the Facebook event page here: https://www.facebook.com/events/210579782766838/
Sacramento Spinal Foundation will be hosting a live webinar with Dr. Graham Creasey, professor of spinal cord injury medicine at Stanford University, on Monday, May 15th to share his work on Restoring Bladder, Bowel and Sexual Function after Spinal Cord Injury.
The online event will take place from 11 a.m. to noon and you may register to view it by sending an e-mail to firstname.lastname@example.org.
The U.S. House of Representatives is considering HR 620, the ADA Education and Reform Act of 2017, a bill aimed at weakening the enforcement of ADA access rights, and disability activists are urging the communities to act immediately by engaging with their local congressional leaders to register their opposition.
Disability Rights Education & Defense Fund recently published an overview of the concerns involving this bill. Among the California congressional delegation, the following members are surprisingly co-sponsors of the bill:
Rep. Scott Peters (D-CA)
Rep. Ken Calvert (R-CA)
Rep. Ami Bera (D-CA)
Rep. Jackie Speier (D-CA)
Rep. Pete Aguilar (D-CA)
Rep. Luis Correa (D-CA)
Rep. Jeff Denham (R-CA)
Rep. Darrell Issa (R-CA)
Please go to contactingcongress.org, and insert your zip code to find many simple methods for contacting your House representative: via e-mail, phone, Facebook, Twitter, fax, etc. or use other channels that you know, to contact your Congressional Representatives.
Though the 25th Annual Day On The Beach event hosted by Shared Adventures isn’t until Sat., July 8th, they are busy raising the badly-needed funds that help make that event a reality every year and they are at it with their participation at this year’s The Human Race on Sat., May 13th.
The Human Race is a nationwide community fundraising event for nonprofit organizations and is the largest collaborative fundraising event in Santa Cruz County as well as the longest consecutive running Human Race in the nation!
The Santa Cruz County Race features an approximate 5 mile run and walk from 2300 Delaware Ave and down to West Cliff Drive to the Light House Park and back. The Walkathon begins at 8 a.m. and takes place rain or shine.
Shared Adventures invites you to walk or roll at this event and support their fundraising efforts. You can sign up here or contact Shared Adventures for more information at (831) 459-7210 or via e-mail at email@example.com.
Formerly Disabled Sports USA Far West, Achieve Tahoe is celebrating its 50th year by providing winter and summer sports instruction at all ability levels for adults and children with disabilities.
Based in North Lake Tahoe, their mission is to provide affordable inclusive physical and recreational activities that build health and confidence. It remains dedicated to the belief that sports are a vital part of the process in which individuals with disabilities gain self-confidence, mobility, and greater independence. Our programs promote education, socialization and employment.
They also encourage the whole family to participate in many of their programs and activities. This can strengthen family bonds while ending the isolation of individuals with disabilities by uniting families through recreational activities.
Individuals with financial hardships may also apply for scholarships to waive the fees to participate in their sports programs.
With all the snow from this year's winter, there's still ample time to enjoy their winter activities and as soon as summer arrives, they will launch their summer activities including their adaptive water ski program, flat-water paddling, kayaking, jet skiing and many other summer activities supervised by trained professionals.
Silicon Valley Independent Living Center (SVILC) has announced that it will be moving into a new office on June 1st. Located at 25 N. 14th Street, suite 1000 in San Jose, the office is fully accessible and the VTA bus stops right in front of the building with bus lines #22 & #23.
SVILC was founded in 1976 and has an additional office in Gilroy (7881 Church Street, Suite C) that would be unaffected by the move of the San Jose office. As one of 28 independent living centers across the State of California, SVILC serves all people with all types of disabilities who live in Santa Clara County.
It doesn't get any better than this fun outing at the exciting San Francisco Exploratorium that takes place on Thursday, April 27th. Organized through a collaboration of the San Francisco Bay Area Spinal Network and The Center for Independent Living in Berkeley, a $10 fee covers your BART transportation (from Berkeley to SF), admission to the Exploratorium and dinner. There are limited slots available and you can only take part by reserving your spot through this link: http://TheCILSpecialEventNight.eventbrite.com
Those who live in the East Bay, you will meet at the Ed Roberts Campus at 5 p.m. Then as a group, everyone will take BART to head over to the Exploratorium. For those on the other side of the Bay Bridge, you will meet Tom Shankle (can also be reached by cell phone at (415) 205-3882), the event organizer, in front of the Exploratorium by 6 p.m. The museum is open until 10 p.m. on this evening.
Though we've written about these events in the past couple of weeks, we thought it might be a good idea to send out a reminder as there are some important and fun events taking place this week. On Thursday, April 20th, Santa Clara Valley Medical Center is hosting its Spring BBQ for the SCI community-at-large from 6:30-8:30 p.m. The free event will be held at the 1 Rehab Center’s courtyard located in the SCI rehab center at 751 S. Bascom Ave. in San Jose. You must RSVP by Tuesday, April 18th and here's how.
Also on Thursday April 20th, the Sacramento Spinal Foundation is hosting a live webinar on Sexuality, Fertility and SCI. The session features Dr. Ryan Doan from the Physical Medicine & Rehabilitation dept. at the Kaiser Vallejo. You must register in advance and here's where to get information to view the webinar.
On Sunday, April 23rd from 8 a.m. to 5 p.m., BORP (Bay Area Outreach and Recreation Program) is hosting its annual Bay Area Adaptive SportsFest in Berkeley. The event features adaptive and accessible cycling, kayaking or rock climbing. They provide all the equipment, staffing and fun you can handle in one day and here's where you can get more information.
Every year, the Placerville Mobility Support Group hosts Hangtown Cranker Classic, a handcycle and bicycle ride for the disabled and able-bodied persons. The event is typically hosted in late June but event organizers have decided to move the event to October this year due to the persistent warm weather that area experiences during June. The change in the date, however, has had an effect on the group's ability to secure volunteer staffing and equipment and this is where they are putting out a call for help. If you are in a position to assist or provide handcycling gear and equipment, please contact Lynn Murray at (530) 295-7620 (cell) or (530) 295-3842 (home), or by e-mail at firstname.lastname@example.org.
We recently featured Arthur Renowitzky who launched the Life Goes On Foundation's Support Group in San Lorenzo and we just learned that Art was featured in CNET Magazine in an article highlighting his use of the Exoskeleton suit. You can read the article here: https://goo.gl/Baz0gY
We couldn't help but notice a tweet from the Reeve Foundation on this topic. It's pretty much on every SCI survivor's mind but doesn't get talked about much. The tweet introduced us to Jessica Grono. While she does not have SCI (is a cerebral palsy and breast cancer survivor, teacher and mother), her article truly applies to people of all disabilities and we thought you might enjoy reading it.
Among the many challenges a new SCI survivor often faces is the lack of individuals they can speak with who have been in their shoes and experienced what life with a spinal cord injury is all about. This applies especially to those individuals who live away from population centers and do not have much access or exposure to support groups in their area. Enter the Reeve Foundation's Peer & Family Support Group program. They offer free peer mentoring to people living with paralysis, their family members, and caregivers. Whether you are newly paralyzed, have been living with paralysis for years, or are a family member or caregiver, their peer mentors will provide answers and support, share what they have learned, and help you overcome challenges. They work to match you with the right person by considering age, gender, cause of paralysis, level of injury, ethnicity, veteran status, interests, and where you live. The mentors have been fully vetted and trained by the Foundation and the program is completely free for users.
To learn more about this program, please check out their site.
The name Ashley Lyn Olson is synonymous in the SCI community with world traveling. Ashley is founder of Wheelchairtraveling.com, a web site she created in 2006. Ashley suffered a spinal cord injury in 1998 at the age of 14 in a solo motor vehicle accident. Her injury is at the T-12/L-1 level and she is wheelchair-bound but that has not stopped her from traveling all across the world.
New Mobility magazine's April edition featured a lengthy column on several accessible Great American Getaways and Ashley was featured in two articles about Sequoia and Kings Canyon National Parks as well as Santa Cruz.
We've all come across them ... that so-called accessible bathroom, the not-so-wheelchair-friendly restaurant, etc. Thanks to the Sonoma County SCI Support Group, you will now have a chance to ask a couple of experts at their Monday, April 17th meeting how to navigate your way around the legal requirements of the Americans with Disabilities Act (ADA). The meeting features HolLynn D’Lil, a disability-rights advocate for the last forty years, who has played a major role in shaping California accessibility standards, including the first California Building Code standards for accessible public accommodations, historical buildings and housing. Also speaking is Richard Skaff, Executive Director of Designing Accessible Communities. He founded the Marin Center for Independent Living, worked as ADA coordinator for the Department of Public Works and then worked as deputy director of San Francisco Mayor’s Office on Disability.
Together, they will share their work on building codes and access standards: what the standards are, the relationship of the California code and the ADA standards, what steps you can take to address code violations, and similar areas of interest in the architectural landscape. There will be time for Q&A as well.
The meeting is from 4-5:30 p.m. at The Clubhouse at the Azure Apartment Complex, 7 Indigo Drive, Petaluma. For more information, contact Stan Kosloski at (860) 614-8351 or by e-mail at email@example.com.
The Risk and Resilience Lab at Palo Alto University is working with the United States Geological Survey (USGS) on a project to better inform citizens about earthquake preparedness. They will be at the Thursday, April 13th Berkeley Spinal Network's meeting so that you can provide input on earthquake readiness and safety materials. The study takes approximately 90 minutes to complete. Only in-person participants qualify for the $20 Target Gift Card that would be awarded. You must be 18+ years of age and identify with having a lifelong mobility impairment. The meeting starts at 6 p.m. Individuals interested must notify Tom Shankle by e-mail of their attendance at firstname.lastname@example.org.
Thanks to the folks at SCI Connections program at Santa Clara Valley Medical Center, a "hello spring, you were missed" BBQ will be held on Thursday, April 20th from 6:30-8:30 p.m. The free event will be held at the 1 Rehab Center's courtyard located in the SCI rehab center at 751 S. Bascom Ave. in San Jose. Bring your friends and family. Food will be provided but you must RSVP by no later than Tuesday, April 18th to ensure adequate supply of food and beverages. To do so, contact Robert Medel by phone at (408) 885-2397 or e-mail at email@example.com.
PNP Blogger, Franklin Elieh, attended the Make-A-Thon in Berkeley on March 18th and was amazed with the spirit of the several dozen engineering volunteers working as teams to solve challenges posed to them by the disabled community. You can sense the amount of energy these youngsters were exuding the moment you entered the facility. As previously reported by PNP, Drew McPherson, a C-6 quadriplegic mechanical engineering student at UC Berkeley, has worked with other engineering students for the past three years to create a club focused on developing assistive devices after seeing so many useless projects be built.
Though the event benefits individuals with any type of disability, I managed to meet a few who had spinal cord injuries and had submitted their request for solutions to their unique challenges.
A friend of mine, and current Santa Clara Valley Medical Center SCI peer supporter, Ligia Andrade was in attendance along with her dad. I met Ligia when she was injured about eight years ago in a car accident. She's a C-5 complete injury and has a somewhat limited use of her arms. Her condition prevented her from applying make up and was dependent on her caregiver or one of her sons to hold and position her brushes, pencils, and lipsticks while she would move her face and apply her own makeup flawlessly.
Ligia behind her newly-designed Makeup Applicator
The design team assigned to her developed a nifty Makeup Applicator that holds all the applicators she uses and for the first time since her injury, Ligia was able to independently apply her own makeup.
I also met Rafe Biggs, another quadriplegic as a result of a fall some 10 years ago. Rafe uses a wireless leg bag emptier to manage his leg bag drainage and in his own words, it's not a reliable system. His design team developed sensors that were attached to the bag and communicated with Rafe's iPhone that allowed him to use an app to keep track of the last time the bag was emptied and how full it was in real time. This allowed him to avoid any overfills and backups as well as timely emptying of his leg bag.
Rafe and his design team with the leg bag emptier
This event's origin comes from TOM:Tikkun Olam Makers (tomglobal.org) , an organization that seeks to address neglected challenges and develop millions of affordable technological solutions for people with disabilities around the globe. It helped support TOM:Berkeley (berkeley.tomglobal.org), a local community for student makers, designers, developers and engineers working together with people with disabilities to develop technological solutions for everyday challenges. This event is co-organized by the student group EnableTech at UC Berkeley, who will provide support for projects to continue after the event.
Sacramento Spinal Foundation will be hosting an online webinar on Thursday, April 20th from 4-5 p.m. featuring Dr. Ryan Doan from the Physical Medicine & Rehabilitation dept. at the Kaiser Vallejo. Topics to be discussed include possible changes in sexuality after SCI, sexual function, fertility and reproduction, management of bodily functions and other aspects of sexual health for SCI.
To view this live webinar, you must register in advance by e-mail at firstname.lastname@example.org.
Bay Area Outreach and Recreation Program (BORP) is arguably the premier center for adaptive cycling riders and is now open Tuesday & Thursday from 1-7 p.m. and Saturday from 9 a.m.-3 p.m. (weather-permitting) for all to enjoy this exhilarating activity. BORP’s Adaptive Cycling Center in Berkeley has the country’s largest and most diverse collection of cycles (over 80) for use by people with physical disabilities. BORP offers orientation and training to new riders, independent use of the cycles, and group rides. Once you have been trained, you can BORP's cycles and ride independently or with friends on over 40 miles of Bike Trails right from the Center.
The Cycling Center is located at 80 Bolivar Drive in Berkeley, at Berkeley’s Aquatic Park. Please call (510) 848-2930 to confirm that the Cycling Center is open.