Spina Bifida Association of California

Meet Anya Kewley, another one of our incredible Walk-N-Roll Your Way Ambassadors! 🎉

Anya was born with Spina Bifida and is a violinist, vocalist, and school librarian from California. She loves making everyone smile.

Anya is a 4th-year Walk-N-Roll team captain for Anya's Angels. She was introduced to the organization 4 years ago as she began transitioning from pediatric to adult care for patients with Spina Bifida. Anya states "I began advocacy on a state and national level immediately and have been heavily involved in all aspects of advocacy on both a state and national level ever since. Advocacy is important to me because it has changed my life and my hope is for it to continue to change my life and the lives of those who will follow in my footsteps to change the world one story at a time." When asked what advice she has for those new to or intimidated by fundraising, Anya advises everyone to be authentic and know that they are changing the world one story at a time.

We are so grateful for all of Anya's hard work and dedication to the cause. Stay tuned for the final ambassador highlights as we conclude this chapter of inspiration and empowerment! 💫

with the University of Alabama want to learn how sexual education, experiences, and practices of individuals with Spina Bifida might relate to their current sexual and reproductive health. Your participation in this study will help inform health care providers on how to best provide sexual health and information to their patients with Spina Bifida. https://redcap.link/SRHinSB

Do you want to join with others online and help cheer on athletes with Spina Bifida competing in the Paralympic Games? If so, follow this link for more information and a sign up form! https://loom.ly/DlSIZeE

Join the Spina Bifida community across the country to watch our favorite Spina Bifida Paralympians compete for Team USA! Registration is required.

We will gather to watch the Opening and Closing Ceremonies, Women’s Wheelchair Basketball, Triathlon, and Track and Field.
To join the party, please fill out this google form. When the viewing schedule is released, you will receive zoom links via email to join others across the country to watch together.
https://loom.ly/DlSIZeE

We had such a great time at the Sacramento Children's Museum with everyone!

🌟 Announcing the Top 10 Fundraisers for July in Walk-N-Roll for Spina Bifida! 🌟

We are thrilled to celebrate and recognize our Top 10 Fundraisers for July! These incredible individuals have shown outstanding dedication, making a significant impact and enabling us to continue our mission to build a better and brighter future for all those impacted by Spina Bifida.

A huge thank you to each of our top fundraisers for their hard work and commitment. Your efforts are truly making an impact.

Let's give a round of applause to our July fundraising superstars! 👏✨

To register for a Walk-N-Roll or host a Walk-N-Roll Your Way, visit www.walknrollforsb.org

Join us Friday, July 26th from 4:30-6:00PM, for a fun evening at the Sacramento Children's Museum!

We encourage individuals and families of all ages to attend. Whether you're new to the Spina Bifida community or haven't attended one of our events before, this is a fantastic opportunity to make new friends, learn about Walk-N-Roll for Spina Bifida and enjoy an evening at the Sacramento Children's Museum!

Tickets are provided at no cost to attendees. We only ask that you complete the RSVP form to let us know you're attending. Spots are limited.
RSVP today https://bit.ly/3S07eoH >>

How can men with Spina Bifida take charge of their health, including matters related to sexual health and intimacy?

Join SBA next Monday, June 10 for a virtual roundtable discussion with two men with Spina Bifida who will share their insights based on lived experiences advocating for and taking charge of their medical care. They will also have a candid discussion about men's reproductive care and sexual intimacy.

Register now:

Men's Health Roundtable: Taking Charge of Your Health The Spina Bifida Association (SBA) hosts a variety of events. By registering and/or participating in an event, participants consent to being recorded. SBA reserves the right to use the recordings for publication, display, promotion, or broadcast (print, web, digital display and all other forms of...

📅 Free Virtual Event: Understanding IEPs/Section 504 for Spanish-Speaking Families

For many Spanish-speaking families of school-age children, understanding IEPs / Section 504 and how they can support their child's academic success can be challenging, particularly due to the limited availability of resources in Spanish.

SBA is excited to announce that on June 17, there will be a Zoom meeting with a Spanish-speaking expert on this topic, Lisa Mosko Barros, Executive Director and Founder of SpEducational.

This is a free, virtual, live event in Spanish. It will be recorded, and all who register will be the first to get a link to the recording before it goes to SBA's YouTube channel.

To register:
https://give.sbaa.org/event/los-planes-iep-y-la-ley-504-para-los-estudiantes-con-espina-bifida/e588830

Date/Time:
June 17, 2024 at 8PM ET / 7PM CT / 6PM MT / 5PM PT

We're thrilled to introduce you to Alicia Alibrando, our dedicated ambassador representing the Spina Bifida Association of California! 🏆🎉

Alicia has a son, age 6, along with a daughter named Alizah, age 4, who was born with Spina Bifida. Aside from being a Mom, Alicia is currently going to school for her MBA degree.

Alicia heard about the Walk-N-Roll for Spina Bifida when her daughter was first diagnosed after doing her own research. She knew she wanted to get more involved, so she Hosted a Walk-N-Roll Your Way in 2020 during Covid where she got to connect and reconnect with other families. Alicia states "It is important for me to participate because I want to help raise awareness around Spina Bifida." When asked what she wants others to know about Spina Bifida, she states "You are not alone. Every case is different but there is so much support in the community and people want to help each other."

Alicia's unwavering commitment to raising awareness and supporting individuals with Spina Bifida is truly remarkable! Join us in celebrating Alicia Alibrando and her incredible contributions to the Spina Bifida community in California!

We've been inspired by the incredible stories shared by our ambassadors, and we're excited to bring you even more ambassador highlights in the coming weeks! 🎉💫

A heartfelt congratulations to all our incredible fundraising frenzy finishers! 🏁🌟 Your dedication and enthusiasm have been the driving force behind our successful Fundraising Frenzy. During the Fundraising Frenzy challenge, $1,676.45 was raised. Each dollar raised has made a tangible impact and we couldn't be more grateful for your support!

As a token of our appreciation, we're thrilled to announce each fundraising frenzy finisher on our Wall of Gratitude! ✨ Your name will forever be a testament to your commitment to making a difference in the lives of those impacted by Spina Bifida, and we're honored to have you as part of our community. 🌟🤝

Together, we can achieve incredible things! Let's keep the momentum going and continue to make a positive impact in our community throughout the entire Walk-N-Roll season! To learn more, visit www.walknrollforsb.org

Time is ticking! ⏰ Tomorrow is the final day of our Fundraising Frenzy, and we're giving you one last shot to score our exclusive special edition t-shirt! 🌟💙All you need to do is:
👉 Raise $100 or more in donations before the end of April 30th.

That's it! Reach this milestone and you'll receive this limited-edition t-shirt as a token of our appreciation for your incredible support! 💪🎉

➡️ Start fundraising now and secure your chance to win: www.walknrollforsb.org

Don't let this opportunity slip away – let's rally together and make these final hours count!

During National Volunteer Week, we want to extend a heartfelt thank you to our incredible Walk-N-Roll volunteers! Your dedication, energy, and enthusiasm have fueled our events and inspired our community.

From serving on the Planning Committees to cheering on participants along the route, your commitment to making our Walk-N-Roll events a success is truly unmatched. 🏆 Your passion for our cause shines bright with every step you take and every smile you share. 😊💖

This week, and every week, we celebrate YOU! 🎉 Let's give a round of applause to our Walk-N-Roll volunteers – tag a volunteer you appreciate and let them know how much their dedication means to you! 👏

To learn about WNR volunteer opportunities in your area, email the WNR Team at: [email protected]

Another week, another incredible group of Fundraising Frenzy finishers! 🏁🌟

We're thrilled to recognize and celebrate the dedication and hard work of all our participants. Your commitment to our cause is truly inspiring! 💖A heartfelt thank you to all our finishers for your passion and unwavering support. We're grateful to have you on this journey with us.

⏳✨ Our Fundraising Frenzy is drawing to a close on April 30th, and we're counting on all of you to help us finish strong! 💪There's still time to make a difference and earn your very own special edition Walk-N-Roll t-shirt by raising $100! Whether you're a seasoned fundraiser or just getting started, every contribution counts!

Join us in our push to reach our goals and create lasting change. Together, we can make a real difference in the lives of those impacted by Spina Bifida! ➡️ Don't wait – get involved today: www.walknrollforsb.org

Let's make these final days of our Fundraising Frenzy the most memorable yet! 🎉 Together, we're unstoppable!

Congratulations to our latest fundraising champion! 🏆✨

A round of applause for Marissa M., who went above and beyond to support our cause! 👏💖 Her passion and commitment are truly inspiring, and her efforts have made a meaningful impact on our fundraising goals and earned her a special edition Walk-N-Roll t-shirt to sport on event day. Her enthusiasm and generosity fuel our mission and bring us one step closer to our goals.

Let's keep the momentum going and continue making a difference, week after week! 💪🚀 Join the fundraising frenzy at www.walknrollforsb.org

Another week of incredible fundraising efforts, another set of finishers to celebrate! 🏆
💫

We're thrilled to announce the champions of our Weekly Fundraising Frenzy & winners of our special edition t-shirt! Thank you all for your unwavering commitment and enthusiasm.

Let's keep the momentum going! All you have to do is raise $100 on your fundraising page by April 30th to receive a special edition T-shirt! Register here: www.walknrollforsb.org

🥁 Drumroll, please! 🥁 A massive shoutout to all who have conquered the Fundraising Frenzy! 🎉 Your dedication, passion, and unwavering commitment to building a better and brighter future for all those impacted by Spina Bifida have earned you our highest praise (and a fantastic new t-shirt to rock on event day!). 🌟✨ Join us in celebrating these phenomenal individuals for their remarkable achievements and exemplary leadership. They serve as a true inspiration, demonstrating the incredible possibilities when we unite.

To delve deeper into the Fundraising Frenzy and the 2024 Walk-N-Roll season, visit www.walknrollforsb.org

We're thrilled to highlight some of our standout participants! Congratulations to the following registered 2024 Walk-N-Roll participants who have already raised $100 and snagged themselves a special edition t-shirt! THANK YOU for demonstrating your unwavering commitment to the cause and setting an example for others. Let's keep the momentum going!

To discover more about the Fundraising Frenzy and the 2024 Walk-N-Roll season, please visit www.walknrollforsb.org

From our friends at KEEN San Francisco:
KEEN Sports Berkeley sessions will be held at the North Berkeley Senior Center at 1901 Hearst Avenue, Berkeley, CA 94709. The first session is Saturday, March 16th at 10:00-11:00am. More session dates to come!

Please spread the word to any friends and families in the East Bay that would like to attend! Slots will be awarded on a first come, first served basis, so please sign up as soon as possible. Waitlist positions may be available. For returning athletes, new athletes, and to volunteer please email [email protected] for more information.

Every 2nd Wednesday of the month, Greater Concord CA Chamber of Commerce presents its Accessibility and Disability Inclusion meeting. Learn more about today's meeting at 3 PM here:

Accessibility and Disability Inclusion Meeting 03/06/2024

HAPPENING TODAY at 4 PM! There is still time to sign up for this community information session on self-management!

Join us for our next Community Information Session on Self Management - Unveiling Potential: Raising Independent Children with Spina Bifida. Learn more and register now https://bit.ly/3T2uwdf
This session, focused on parents of children with Spina Bifida, will include:
- Raising a child with Spina Bifida to be independent and overcome challenges.
- What parents need to know about executive function and learning.
- Where to look for support - knowledge, community, technology.
- Looking at the child as a child, not just a child with Spina Bifida.

LOS ANGELES: This March 15-17 schedule your weekend to be at the LA Abilities Expo! Registration is free for all participants and get the chance to see some awesome featured shows and meet vendors that are making a difference in the disability community.

Abilities Expo Los Angeles | The Event for People with Disabilities Abilities Expo Los Angeles: Three days. One roof. Endless opportunities for people with disabilities!

For our Inglewood and surrounding constituents: Join BEAM on March 12th for their Heart Space Los Angeles: Living & Loving w/ Chronic Illness and Disability. Learn more about the dynamic work BEAM is doing within the Black community here:

Heart Space Los Angeles: Living & Loving w/ Chronic Illness and Disability An interactive support group and emotional skills building space for Black folks looking to learn and connect.

For any businesses and organizations in the San Rafael region: the Marin County Office of Education will host an ADA/FEHA disability compliance workshop on March 8th. For more information click on the link below.

The Essential ADA/FEHA Disability Compliance Workshop Making Reasonable Accommodation Decisions

We can’t wait to see how this amazing opportunity makes a difference in the Spina Bifida and disability community. Congrats Sara!

Spina Bifida Association President and CEO, Sara Struwe, joins the AAHD Board of Directors. In a press release, the American Association on Health and Disability announced announced the appointment. AAHD's Executive Director, Karl Cooper, celebrated by saying, "We are eager to bring Sara's expertise in community-engaged disability research and public health to the AAHD Board of Directors. We welcome the opportunity to broaden our network of partners involved in cross-disability advocacy to advance health care for our communities."

The Spina Bifida Community congratulates Sara and wishes her continued success in efforts to reduce health disparities between people with disabilities and the general population, and to support full community inclusion and accessibility.
Read the press release: https://aahd.us/2024/02/sara-struwe-joins-board-of-directors/

Today is the day the website is officially live! Head to the website and learn more about our Fundraising Frenzy and California’s 2024 walks!

The 2024 Walk-N-Roll season is officially open and we’re celebrating with a Fundraising Frenzy. Register for a Walk-N-Roll or Walk-N-Roll Your Way and raise $100 on your personal fundraising page between March 1 – April 30, 2024 and you'll receive a special edition Walk-N-Roll t-shirt. www.walknrollforsb.org

For the first time ever, we presented the Young Adult Advocate Award at the 2024 Teal on the Hill. This award is presented to a young adult(s) who has had significant and lasting impact on advocacy for research and other policy issues affecting the lives of people with Spina Bifida.

We presented the Young Adult Advocate Award to Shoshana Siegel and Charlotte Mountz. Both Shoshana and Charlotte have played a key role in making Teal on the Hill happen and has worked tirelessly to further advocacy efforts across the younger generation.

Tom Baroch is someone who worked tirelessly for SBA and for people with Spina Bifida. In 2018, we lost Tom far too soon. To honor Tom and keep his spirit alive, the Tom Baroch Advocacy Award was created.

The award is presented to an individual or individuals who have had significant and lasting impact on advocacy for research and other policy issues affecting the lives of people with Spina Bifida. The intent of the Award is to put the spotlight on an advocate(s) who dedicated him/herself to representing people with Spina Bifida in the public policy arena.

At the 2024 Teal on the Hill we posthumously awarded Jennifer Fitz-Roy the Tom Baroch Advocacy Award. Jennifer led a life of service as a staunch advocate for people with Spina Bifida.

Thank you to those who support the Spina Bifida community

Teal on the Hill is just around the corner. Check out the companies who are taking a stand with you. Coloplast, Wellspect, Hollister Incorporated, Full Speed Innovation LLP - biotechnology and life sciences consulting, Smith+Nephew

There is still time to register for this afternoon's Ask the Expert on weight management for persons with Spina Bifida. For more information click on the link below.

Ask the Expert: Exploring Weight Management and Weight-Related Behaviors The Spina Bifida Association (SBA) hosts a variety of events. By registering and/or participating in an event, participants consent to being recorded. SBA reserves the right to use the recordings for publication, display, promotion, or broadcast (print, web, digital display and all other forms of...

🌟 Exciting News: Meet the Faces of the 2024 Walk-N-Roll Season! 🌟

As we embark on the journey of the 2024 Walk-N-Roll season, it brings us immense joy to introduce the remarkable individuals who will be serving as this year's 2024 Walk-N-Roll Ambassadors!

C**t & Jordan Kirby
Charleston Walk-N-Roll

Alicia Alibrando
Sacramento City Walk-N-Roll

Audra Beasley
Oklahoma City Walk-N-Roll

Rose Calvert
Nashville Walk-N-Roll

Mary Wilson Joseph
Atlanta Walk-N-Roll

Marie and Danielle Delgado
Greensboro Walk-N-Roll

Eric Tobin
Los Angeles Walk-N-Roll

Marissa & Lenny Miles
Orlando Walk-N-Roll

Carson & Maranda Jones
Houston Walk-N-Roll

Anya Kewley
Walk-N-Roll Your Way

Leigh Herndon
Walk-N-Roll Your Way

Throughout the season, these incredible Ambassadors will share their personal journeys and connections with Spina Bifida. Together, we aim to make a meaningful impact and build a brighter future for everyone impacted by Spina Bifida.

Join us in the celebration! The Walk-N-Roll is not just a one-mile non-competitive event; it's a vibrant gathering that unites families, friends, healthcare providers, and the community at large. Let's make every step count, creating connections, joy, and hope.

Registration opens Friday, March 1st!

Every Mile Makes a Difference.