The GACI/ARHR2 Community has members around the world. For the first time ever, members from the community will be unified on one day around one shared cause when we participate in the GACI Global Worldwide Walk. Patients, families, and friends can form teams around the world. Each team will fundraise in an effort to raise awareness and to raise money to further the mission of GACI Global – to connect families to each other and the medical community, to provide current educational resources, and most importantly to support ongoing research for better treatment options. Teams can be formed, joined, and managed through this link: https://www.classy.org/campaign/gaci-global-worldwide-walk/c254349. Click here for detailed help on setting up your team or fundraising page.
September 12th, 2020. You choose the start time! Do you want to walk in the morning or the afternoon? It’s up to each team to decide what works best for them.
3 kilometers (just under 2 miles for those in the United States!). This length is long enough to be worthwhile, but manageable enough for the whole family. Along with the family friendly route length, there is an additional meaning attached to the number 3. There are 3 potential causes of GACI: ENPP1 Deficiency, ABCC6 Deficiency, and an unknown gene (or genes). No two patients with GACI/ARHR2 will travel the same journey. Each patient deals with unique circumstances and experiences. But we are walking for ALL patients, ALL families, affected by GACI or ARHR2.
With the health and safety of our community members and supporters in mind, we are encouraging people to create a walking route within their own neighborhood if at all possible, and to walk only with your own family. Although this means that a team’s members may be separated and walking in different neighborhoods, towns, or cities, we will still all be walking on the same day for the same cause. We will be walking separately, yet joining together in honor of those affected by GACI/ARHR2 and in memory of those that we’ve lost to GACI. Each team’s members can decide on their own walking route. A walk planning app or website can be used to create a route – check out onthegomap.com! Would you like to walk through a local park, hiking trail, or through your neighborhood or town beach? Be creative and have fun! You could start and end at a specific point with a celebration at the end. Backyard BBQ… lunch at a restaurant… drinks at a pub… whatever works for your family!
Generalized Arterial Calcification of Infancy (GACI) and Autosomal Recessive Hypophosphatemic Rickets Type 2 (ARHR2) are ultra-rare conditions that impact only 1 out of every 200,000 people. The survival statistics for GACI are currently estimated to be around 50%, with the most critical period being the child’s first 6 months of life. The length of time from symptom onset to proper diagnosis of a rare disease is currently 4.8 years. Most doctors have never even heard of Generalized Arterial Calcification of Infancy. And an infant born with GACI does not have 4.8 years to wait for proper diagnosis. Early diagnosis leads to earlier treatment options. Early diagnosis saves lives. But even with early diagnosis, the current treatment options are not good enough. There are so many unknowns with this disease, so many questions that don’t have answers. Better treatment options may be on the horizon. And with more research, more answers could be discovered. And so we walk. We walk to raise awareness. We walk to raise funds necessary to change the future for those affected by GACI/ARHR2 today and those born affected by GACI tomorrow. We walk in celebration of the survivors. We walk in memory of those lost to GACI. Will you walk with us?
To create or join a team, visit the worldwide walk fundraising page. If you have other families affected by GACI/ARHR2 in your area, consider joining forces and creating a team together. Or create a team for your family and recruit brothers, sisters, cousins, aunts, uncles, and friends to walk on your team. If you don’t feel ready to create your own team this year, please feel free to join one of the teams each of the GACI Global directors will be leading:
Social Media: Sometimes the easiest way to get donations is to share your fundraising page on your social media accounts. Share a little bit about why you are walking in the GACI Global Worldwide Walk. People are more likely to donate when there is a personal story attached to the request.
50/50 Raffle: The benefit of offering a raffle like this is that there is very little expense and effort involved, yet you have guaranteed revenue and a way to involve everyone in supporting your team.
Bake Sale: We suggest not putting a dollar amount on your cookies, but instead ask people to donate whatever feels good!
Donation Jar: Ask local businesses or your place of employment if you can put a collection jar somewhere visible. You can decorate your jar with a print-out that includes information about why you are walking and why it is important to you.
Envelope Fundraiser: Buy a package of envelopes and number each one (i.e. from 1 to 100). Get permission to hang them up in a central location at your place of employment, school, community center, etc. People can donate by choosing an envelope and giving the amount on the front. With 100 envelopes, you have the potential to raise over $5,000 for your team!
With the health and safety of our community and our supporters in mind, the GACI Global Worldwide Walk has been postponed and will no longer be held on May 16th, 2020.
A new date for the Worldwide Walk will be announced when further information on the current coronavirus pandemic becomes available. Team captains, we would appreciate if you could pass this information on to the members and supporters in your teams.
We are very grateful to everyone who has created a team or joined a team so far. We are also very appreciative of all the donations received to-date. We will be in touch again when we have more information.