As 2015 draws to a close, it is exciting to look back at what we have accomplished in the past year.
So much of what ASF has achieved was because numerous people in the Alport syndrome community stepped forward and got involved. Thank you!
Recently ASF President Sharon Lagas shared the following in our December newsletter:
If there is one message I want to convey to our community it is that PATIENTS ARE KEY! We have the key to shape the future of Alport syndrome in our families.
No drug or treatment can be approved without us. Clinicians, researchers, and pharma all need patients to test their therapies or participate in studies. They need patients to report outcomes and inform them of the changes to their quality of life and effects of their disease.They need patients to join the registry. We are the key to our future and as a patient community we need to connect, inspire, empower and to ignite change. This will be the focus for ASF in 2016!
As we reflect on the past year, we are very proud of what has been accomplished because of your support and engagement:
- Funding of three research grants ($300,000) on basic science, translational studies and drug repurposing by ASF and its partners in Canada and the UK
- Continued support of the Alport syndrome Treatments and Outcomes Registry (ASTOR)
- Co-sponsored the International Research Workshop in Germany to continue development of a strategic research agenda – attended by 100 researchers, clinicians, patient advocates, and pharma/biotech industry
- Exhibited at the American Society of Nephrology Kidney Week to raise awareness in the nephrology community and meet with researchers and medical advisors
- Sponsored a patient meeting with international Alport syndrome experts
- Mobilized the community for Alport Awareness Month held in March in conjunction with National Kidney Month
- Participated in advocacy events and summits with the National Kidney Foundation, National Organization of Rare Disorders, and the American Society of Nephrology
- Started the ASF blog to provide additional educational information to our community
- Expanded social media on ASF’s private Facebook support group, public Facebook page, Alport Avengers teen and young adult page, Instagram, Twitter, LinkedIn and ASF YouTube channel.
- Awarded Paul Silver Tribute Award to deserving young patients ages 16 to 22 years old
- Continued working with the international patient community
- Provided information to members on current clinical studies and registry participation.
The Alport syndrome Foundation continues to be a volunteer-led organization and we thank you for working together with us to improve the lives of patients and families dealing with this disease.
We wish you and your family Happy Holidays and a Healthy and Happy New Year.