Kyki's Rare Adventures Coloring Book

04/21/2024

Hope…. 🙏🏻

04/04/2024

Registration is NOW OPEN for the Million Dollar Bike Ride! 🚴‍♂️🚴‍♀️

Join us on June 8, 2024, for this incredible annual cycling event by the University of Pennsylvania, supporting rare disease research.

Riders from Team NBIA and many other rare disease groups will gather in person in Philadelphia, Pennsylvania, or participate virtually in their own community. This is an international event, and everyone is welcome! 🌎❤️

Registration rates will increase on April 1st. Secure your spot today!

If you have questions or want more detailed instructions on how to register, please message us! 📩

Check out Team NBIA here: https://charity.pledgeit.org/t/YHyPGwmYRs
Register here: https://charity.pledgeit.org/MillionDollarBikeRide

06/03/2023

The generosity of others is astounding. Two donors each gave $10,000 to the NBIA Disorders Association, which pushes us to our $30,000 goal in The Million Dollar Bike Ride with just 8 days until the race. We turn that $30,000 into $60,000 by achieving this important fundraising milestone. Thank you to every single person who helped us get here.

These donors join our tribe to fight for the lives of our kids - giving us opportunities to fund research grants, a chance to find treatments that could stop their degeneration, a little more hope we’ll find a cure.

Thanks to two incredible donations we have been able to smash our $30,000 goal for the Million Dollar Bike ride a week before the actual event!

Isabel's Chance, a nonprofit started by the Cowan family in honor of their daughter Isabel who has BPAN, made a very generous $10,000 donation to Team NBIA Disorders for the Million Dollar Bike Ride! To learn more about sweet Isabel and her journey please visit isabelschance.org.

The very same day, the Mickeliunas family also received an anonymous $10,000 donation in honor of Jenny's bike ride for her son Elliot who has BPAN. Her family has been able to raise over $16,000!

We are incredibly grateful for these two donors who have elevated our goals for BPAN research through the Million Dollar Bike Ride. With the combined efforts Team NBIA Disorders is nearing $70,000 which includes the $30,000 match from UPenn's Orphan Disease Center.

With upcoming community fundraisers and still one week away from the ride we are hopeful of having enough momentum to raise enough money to issue not one, but TWO BPAN research grants! If anyone can do it, it's our BPAN community!

05/31/2023

We had our bi-annual family conference this year in Houston.

02/15/2023

Rare disease day is always the last day of February.

01/10/2023

Friends close to Cranford, NJ check at Ambeli Greek Taverna they are matching (up to a $50 gift certificate) for those who donate to NBIA or get Kyki’s coloring book. Thank you for your kindness in thinking about our Kyki. 💕
Side note: food is delicious!!

Giving back is always SUPER!!

In support of our young friend Kyki, we are matching any donations made until Sunday, January 15th to NBIA (up to $50) with an Ambeli Greek Taverna gift certificate.

Read more of Kyki's story by clicking the link below to receive "Kyki's Rare Adventures" coloring book along with your donation.

https://rare-adventures.square.site/

12/08/2022

BPAN was in the news!

https://news.sanfordhealth.org/research/promise-program-offers-students-research-experience/?fbclid=IwAR0Q4zPNqdxLzcpjuK3gfCA5disuDroZdbU_9R7mH3eULhptQKt_-DNnLK8

12/03/2022

11/11/2022

We lost a beautiful 34 year old BPANner this week and my mind just can’t stop thinking of her and her family. Hug your kids/grandkids close because this life we travel can be very rough. My thoughts and prayers to the family 🙏🏻. May you rest in peace Natasha and enjoy talking, running, walking, dancing with your fellow BPANners in heaven where there is no suffering.

06/25/2022

As we keep our kids busy this summer, please don't forget to post your kids art from our Coloring Book. We would love to see their superhero creations!!

06/03/2022

9 years 11 months … I have waited for a real hug from Kyki. And today I got 😃❣️❣️❣️ arms out around my neck with a squeeze, God it felt good to feel her kindness. She’s always been kind and sweet and her hugs were always there but closed in. Today was open arms. 🎆She also got ahold of my bracelets and was super excited to wear them 😆. Girls, we do love our jewelry 🤣