The Laurita Spina Bifida Project

From Laurita and her family, to every single person in our village, we wish you all a very Merry Christmas, Happy Holidays, and a Happy New Year! 🎄🕎 🌟

Thanks to a very generous donation from Dr. Mary Stapel of Illinois, which our team facilitated via wire transfer, the Hope Inclusive Development Center, run by our partner, Ambrose Ganshanga, in Mbarara, Uganda, can continue operating. The center serves children with and without disabilities, and Ambrose and his colleagues also work hard to educate parents, educators, and healthcare professionals. 🩺

We were also honored that Dr. Stapel donated to Spero International, founded by Martin Bukenya, and whose mission aligns very closely with our support of the Hope Center. In fact, Ambrose and Martin have worked together and remain good friends. 🤝🏽

When we initially decided to create The Laurita Spina Bifida Project, the dream was to help "connect the dots" in the global spina bifida community, so that others could help each other meet their needs. We are so grateful to be a part of this village, and even prouder to continue supporting their work to build a more inclusive world. ❤️🌍

-- Laurita

We are so grateful this for our community partners, like Ambrose Ganshanga, Founder of Hope Inclusive Development Center in Mbarara, Uganda, who inspires and motivates us through his tireless work with children with disabilities who would otherwise not get the medical care and education they deserve. 💚

To learn more about the Hope Inclusive Development Center and to donate, please visit www.lauritaspinabifidaproject.org/hope 🏫 👩🏽‍🏫 🦽

More updates are coming soon about the Center and Ambrose’s advocacy for children with disabilities in Africa. 🫶🏽

Our Founder, Laurita, has a special wish on her birthday. 🎂 🧡

It’s past midnight, so I guess it’s my birthday. 🎉

I wouldn’t say I’ve been completely resisting this one, but I have been very pensive and have reflected a lot on what it means to grow older, and hopefully a bit wiser.

No matter how hard some parts of this year have truly been, for whatever reason, I’m still here, and because of that, I want to continue to do my part to make this world a little better.

If you would like to make my day even more special, I’m asking people to donate whatever amount you can give to The Laurita Spina Bifida Project (fundraiser tagged in this post). We are still the small, 100-
percent volunteer, family-run organization we have always been, and I promise you- every cent will go toward helping children and adults with spina bifida and hydrocephalus who are in dire need— wherever help is most needed. 🫶🏽

If you’ve played even a small role in making my life amazing, THANK YOU. It is not lost on me amidst announcement after announcement of people in the spina bifida community leaving us how truly lucky and Blessed I am that I am still here, shaking things up.

Today, I blow my candles out for all of you. 🎂 🩵

Nous avons beaucoup de chance! We are very lucky! 🧡

I (Laurita, Founder & President) have been staying in Paris for several weeks while traveling with my parents (Myrna and Miguel, Vice President and Treasurer, respectively) as part of a longer family trip.

While we are technically on “vacation,” and our travels are not affiliated to any charitable efforts, I couldn’t resist reuniting in Paris with some longtime dear friends from Spina Bifida France (ASBH) who we met back in October 2015, as well as making some nouveaux amis (new friends)!

While France is indeed a large country, the spina bifida community is tight-knit and strong here. My family and I spent an afternoon enjoying a delicious lunch, making conversation, and sharing stories of struggles, joy, and hope in the disability community.

Indeed, we continue to share many of the same frustrations, heartaches, and triumphs,
such as finding employment, balancing family and relationships, and staying on top of our health and wellbeing.

We are endlessly grateful to Emily, Danielle, and Dominique for planning this special rencontre on a gorgeous Parisian afternoon at a very accessible restaurant! (And video coming soon— the restrooms in there are the coolest thing ever! Very futuristic.) 🚽 🚀

Merci beaucoup à tout le monde— many thanks to ALL who made especially long journeys to spend time with us!

You are forever our famille française— our French family. 🇫🇷💙

Santé! 🥂

To our dear community, please read a statement from Laurita regarding the horrific plane crash on January 31st carrying a young patient from Shriners Children's Hospital and her mother:

"This past month, and this past week in particular, has felt so heavy for me and my family. One of the latest events, the tragic plane crash that occurred in Philadelphia, has hit me especially hard.

The plane was transporting an 11-year-old girl who had been a patient at Shriners Children’s Hospital for the past four months. She had successfully finished her treatment and was flying home to Mexico, along with her mother who was by her side.

While I have been quiet as I’ve read and heard different information shared, it was confirmed that young Valentina had spina bifida and was receiving treatment for a related condition. The death of any child should be considered tragic, but I cannot adequately express the depths of grief I experience when it is a child with spina bifida.

As I’m sure the crash will be investigated thoroughly, my prayers are with her surviving family and loved ones who mourn both Valentina and her mother, the crew on that flight, and the entire staff at Shriners who have expressed getting to know and love this little girl. My heart aches for all of them. "

-- Laurita Tellado

On behalf of Laurita and her parents and co-board members Myrna and Miguel, we wish you a beautiful holiday season filled with much love, peace, and joy. 🎄🕎

We appreciate our village so much! Because of YOU, we continue to support spina bifida and hydrocephalus communities in countries in dire need. 💝

If you'd like to contribute and have not yet, please consider us for your or your company's end-of-year donation here:

https://lauritaspinabifidaproject.org/donate-now/

This year, your generous spirit gave access to clean water for the children of Hope Inclusive Development Center in Uganda. 🇺🇬

Thank you for your wonderful support, and may you have a lovely holiday season! ✨

The end of the year, for many, is a time of reflection and giving thanks. It is also a time to give back to our communities and extend generosity to our families, friends, and neighbors. 🫂

The Laurita Spina Bifida Project could not continue to exist without you. Thanks to your donations, this year, our partners in Uganda were able to install a brand-new water tank after the previous one burst, threatening to leave them without an accessible source of clean water for their everyday needs. 🚰

To make a contribution, simply click the “donate” button above, or please visit www.LauritaSpinaBifidaProject.org to donate at our website. 🎁

Please consider us for your or your company’s end-of-year donations, or for giving on a continued basis, as well. It really does take a village, and we’re forever grateful to have you as part of ours! 🫶🏽

With hearts full of gratitude, we thank you for another year of generosity! 🫶🏼

As we continue advocating for the global spina bifida and hydrocephalus community, are so grateful for our village of support that allows us to help those in greatest need. 🧑🏾‍🦽👩🏻‍🦼

To find out more about our projects and share in our mission, please visit www.lauritaspinabifidaproject.org. 👩🏻‍💻

We wish you a very happy Thanksgiving with you and your loved ones! 🍂 🥧 🧡

Back in early August, my family and I received an urgent plea from our partner, Ambrose Ganshanga, in Uganda.

He had written us the following message:

“Greetings dear Laurita, I am hoping that you are well. Today we wake up in a tragedy! Our 20,000-liter tank full of water burst last night, and we [are] stranded this morning. We have been relying on water harvesting [from rain] for survival, and our children’s second term is underway. We need immediate help to install a new tank, immediately. We need around $1,500 [U.S. dollars]; kindly help if you can. Thank you.”

I immediately sprang into action, with the support of my parents, and launched an online fundraiser on Facebook. With your generosity, we were able to raise $716 to pay for the installation of a new water tank! 🚰🎉

Their needs, however, are ongoing, so we appreciate any contribution you can give. No amount is too small to assist with their urgent needs.

Today, I am grateful to share another update from Ambrose. He writes:

“In a thankful voice to you and all your friends who have supported us, we have our water connection and harvesting tank restored! Now, we can support our children’s self-care needs with ease. We are really grateful for your unfailing love and support. God Bless you.” 🥹

Words fail to convey how humbled and appreciative I am of our “village” and the steadfast support and passion you all demonstrate for our global spina bifida and hydrocephalus community! Tonight, because of YOU, our friends at the Hope Inclusive Development Center in Mbarara, Uganda will have clean water to take care of their most basic needs. 💛🇺🇬

Remember you can also donate via our website: www.lauritaspinabifidaproject.org/hope 💻

🚨The Laurita Spina Bifida Project received today an urgent plea for help from our partner, Ambrose Ganshanga, on behalf of the Hope Inclusive Development Center in Mbarara, Uganda. 🚨

We hope our village can kindly join me and my family in supporting the HIDC in this unforeseen crisis. I am sharing below Ambrose’s message to us, and am opening up a fundraiser to help them in any way we can:

“Greetings dear Laurita, I am hoping that you are well. Today we wake up in a tragedy! Our 20,000 liter tank full of water burst out last night, and we [are] stranded this morning. We have been relying on water harvesting [from rain] for survival, and our children’s second term is under way. We need immediate help to install a new tank immediately. We need around $1,500 (U.S. dollars); kindly help if you can. Thank you.”

To our community— please share this post far and wide. and we need all of you. THANK YOU!! 💚

One of my most personal missions has always been to make the world more accessible – and as a result, make life easier – for those of us living with disabilities.

This week, the U.S. Department of Transportation and U.S. Transportation Secretary Pete Buttigieg announced a new proposed rule that would expand the rights of travelers with disabilities and allow us to travel “safely and with dignity.”

I can’t begin to tell you all how thrilled I am to learn that the concerns that people with disabilities have voiced for as long as air travel has existed are finally being taken to heart.

I personally have sought to hold several airlines accountable for their mistreatment of wheelchair users. To use a wheelchair means to constantly be on guard for your personal safety and often, it means we are treated no better than luggage.

This ruling promises to mandate annual training for airline employees and contractors who are in direct contact with passengers with mobility disabilities, penalties for mishandling or damaging mobility equipment, and, overall, “safe and dignified assistance” which, in the past, has been incredibly rare for people like us.

This proposed rule even asks for feedback regarding the long-fought issue of providing wheelchair-accessible lavatories onboard planes, because “dignity” also means not having to hold it in until you land.

I don’t know how this will all unfold, but I am especially grateful to all of my fellow activists who have fought the good fight and made this proposed rule possible. Thank you for allowing us all to be seen and heard, and for not letting this be yet another “to-be-solved” problem for people with disabilities that remains up in the air. 🦽🛫

-- Laurita, Founder & President

Full press release here: https://www.transportation.gov/briefing-room/secretary-buttigieg-announces-proposed-rule-ensure-passengers-who-use-wheelchairs-can

🦽🧳

In late June, my friend Marisa and her daughter, Addie, who has spina bifida, traveled via Delta Air Lines. Delta destroyed Addie's wheelchair and since then, she has been forced to use a loaner chair that is not even close to what she needs for her mobility. 🦽

While Delta, thanks to Marisa's advocacy, agreed to pay for Addie's replacement wheelchair, after having to use a chair that is not adapted for her body, Addie developed a serious pressure sore that has kept her in bed for 23 hours a day. 😔

Addie, a vibrant, bubbly, and compassionate girl who does plenty of philanthropic work in her community, was unable to attend her first day of senior year in high school. What's more, her mom's letter to Delta’s CEO— was delivered to the baggage department and she received a standard form reply. 😠

Please help get Addie's story out. Wheelchairs aren't baggage. Children aren't baggage. People aren't baggage. 🚫🧳

Addie should be out there doing all of the remarkable things Addie does! 👑

Also, check out and "like" Addie’s Royal Cupcake Stand where you can find out more about Addie and Marisa's incredible work! 🧁

-- Laurita

First Day of Senior Year Looks Different for Addie Addie Loerzel didn't get to attend her first day of senior year due to pressure sores from not having her proper wheel chair.