To be successful, we rely on our community to help us in our cause. Join our community today.
We cannot improve the lives of patients and families affected by ALD/AMN without the involvement of concerned, invested, and dedicated individuals and institutions. From the smallest wish to the grandest vision, the success of ALD Connect and organizations like it ultimately rests on the shoulders of people who are willing to work together and carry the mission forward. Continue reading to find out about some of the ways you can get involved.
Contribute to our mission
Your financial contributions directly fund patient outreach, engagement, and education events and programs. Your help also goes beyond everyday patient concerns—it helps further the scientific community’s understanding of this disease.
From our Patient Portal which allows patients to speak directly to researchers and industry to our NeuroBANK doctor-entered data that tracks patient’s neurologic symptoms over time, your support helps us fund ALD Connect’s research projects that are providing not only a foundation for advancements in dis-ease knowledge, but a springboard for therapy developments.
Share your story
An important part of ALD Connect’s mission is to grow and maintain connections in the ALD community. Those who have or care for someone with a rare disease can often times feel isolated. By sharing your story, you can provide hope and support for others affected by ALD, strengthen bonds in our ALD community, and promote awareness of ALD in society as a whole. We would love to highlight your story on social media. If you would like to contribute to our community mission in this way, please email us at firstname.lastname@example.org, or message us on Facebook.
Advocate for newborn screening in your state
Although ALD was added to the federal Recommended Universal Screening Panel (RUSP) on February 16, 2016, this does not mean that all states immediately added ALD to their newborn screening panels. While some states are currently screening for ALD, work remains in the others.
Each day that a state does not implement newborn screening for ALD, children risk being condemned to what in many cases is a preventable death. A few additional states are gearing up for the implementation of ALD screening. However, most states are nowhere close to implementation, and in the meantime precious lives will be lost.
If you live in a state that has not implemented newborn screening for ALD, there are things you can do! Call your state legislators and tell them your story. Let them know about ALD, and how screening for this disease saves precious lives. Contact your local news organization to get the word out about ALD and the #savetheboys movement. Use social media to promote awareness about ALD and newborn screening. Awareness increases the power to change the status quo and save lives.
ALD Connect will continue to serve as an information resource for these efforts, as well as a resource for connection. By connecting ALD families, we become a stronger, united voice to policymakers.