@lbhgives

@lbhgives replied on @geomk66 post

@geomk66 donated $400.00 to Share Your Rare Campaign
4 months, 4 weeks ago

@lbhgives Thank you!! When you get your bracelets add your posts back here as well as your other social media. We would love to hear your stories!!
4 months, 4 weeks ago
@lbhgives reposted @lbhgives

@lbhgives donated $250.00 to Share Your Rare Campaign
5 months, 1 week ago

@lbhgives Posted a Image in Share Your Rare Campaign
5 months, 1 week ago

You may wonder how you can get one of these amazing Onyx black and gold bracelets so you, too, can participate??? You can get a bracelet by donating just $50 to help save the lives of children with ultra-rare diseases! Donate through this site and we will then send you one of these beautiful bracelets and you can post it on your social media in support of this important international movement! Join us and #ShareYourRARE

@lbhgives Posted a Image in Share Your Rare Campaign
5 months, 1 week ago

We launched the Share Your Rare campaign with a MN Wild hockey player helping us raising awareness, solidarity, and funds for children with rare diseases. Who's arm is this?!? Stay tuned to find out why this NHL player is participating in the #ShareYourRARE campaign in solidarity with children with rare diseases to let them know we are with them and that we are all rare in some way. We can use our "Rareness" to help raise funds to ensure they have the lives they deserve!

@lbhgives posted link in Share Your Rare Campaign
5 months, 1 week ago

@lbhgives posted link
1 year, 1 month ago

@lbhgives Posted a Image in Journey to Save Michael
1 year, 3 months ago

In 2019 at age 15 months Michael was diagnosed with an ultra-rare condition called SPG50 disease caused by a single gene AP4M1. Doctors explained that there was no cure, nor any treatment options for this rare neurological degenerative disorder which would slowly take away Michael's cognitive and physical abilities similar to Cerebral Palsy but progressive. His Parents Terry & Georgia are unwilling to accept this prognosis and are hoping to fund gene therapy to cure or at least stop the progression of this terrible disease not just for Michael but all children affected. This would not be possible if not for the amazing and courageous work being done by the families affected by SPG47 (Another disease within the AP-4 gene complex).

@lbhgives posted link in Journey to Save Michael
1 year, 3 months ago

@lbhgives posted link in Journey to Save Michael
1 year, 3 months ago