Rare Disease Day is February 28th, 2018!
Rare Disease Day is a global day for patient advocacy to recognize the millions of people who are suffering from rare diseases. Think about how to participate in this day as a supporter of all those suffering from GM1 Gangliosidosis. Participating could be as simple as wearing denim/jeans, taking a photo and posting it on social media. Donations and fundraisers also help towards advancing programs to support medical research.
One of the biggest conferences for lysosomal storage disorders will be taking place this week in San Diego. This is an opportunity to learn about the latest research and advances in lysosomal storage diseases. Cure GM1 will be attending to meet with researchers and to learn about the latest trends. Research must be advanced to create treatments for GM1. Several posters are being presented specifically on GM1 and we’ve also arranged meetings to get updates from those working on GM1 Gangliosidosis research.
In collaboration with Global Genes and the Festival of Children, Cure GM1 is one of many rare disease charities participating in a peer-to-peer fundraising event in honor of Rare Disease Day. This fundraiser will culminate in a Rare Disease Day event in San Francisco on Rare Disease Day.
To help with this event, simply support the dream of finding a cure for GM1 by donating or by joining the team and asking friends to donate in honor of Rare Disease Day. All proceeds donated to the Cure GM1 team will be directed to our foundation.
Pay Pal Giving Fund and Facebook Donations
Cure GM1 was recently approved to participate in the PayPal Giving Fund and in the Facebook giving program. Both programs provide a platform where NO platform fees are applied to donations. In both cases, please be aware that the reporting to the foundation regarding donations is absolutely minimal. This means that both PayPal and Facebook issue the receipts for the donations and Cure GM1 does not receive contact information in most cases. Please don’t be offended if we don’t send our own receipt or letter because we’re not being given the specifics. In most cases, the donations are reported as being anonymous on these platforms.
Happy Birthday Sweet Iris on February 19th!
We are extremely proud of all the progress the foundation has made with over $2.2M raised thus far. At this time, we find ourselves in need of further funding to be able to reach a small Phase I human clinical trial.
We genuinely hope that Lysogene will also initiate their clinical trial which is currently scheduled for 2019. Furthermore, the rare disease space and the GM1 space is becoming more active. We are working hard to create the best possible initiatives and we hope to make announcements regarding these plans in the coming months.
Your help and the generosity of supporters is absolutely critical to continued progress. Thank you!