Innovative Partnership to Fund Rare Disease Research
CROWDFUNDING PLATFORM CONSANO PARTNERS WITH THE TRANSVERSE MYELITIS ASSOCIATION TO FUND PATIENT-DRIVEN RESEARCH
PORTLAND, Ore. – Consano (www.consano.org), the first non-profit crowd-funding platform focusing solely on supporting medical research campaigns has partnered with The Siegel Rare Neuroimmune Association (www.wearesrna.org), a foundation dedicated to the support of people with a spectrum of rare neuroimmune disorders.
In a new way of thinking about prioritizing research funding, the two organizations worked together to survey SRNA patient community about their research priorities to understand the leading research concerns and chose a research project to crowdfund that addresses one of the key concerns for SRNA community.
The topics of highest interest to The Siegel Rare Neuroimmune Association’s patient and caregiver community were “the most effective and safest ways to repair or heal the spinal cord and/or brain and/or optic nerve;” “determining the causes of each disease, including the genetics and environmental factors and finding biomarkers to make the diagnosis more definitive and more rapid;” and “finding the most effective and safest treatments for the symptoms of each disease, which result from damage to the spinal cord and/or brain and/or optic nerve.” The survey results were shared with the community in the SRNA Spring 2014 newsletter.
After hearing from the patient community and in partnership with members of SRNA’s Board of Directors and Medical and Scientific Council, of the several important and novel research ideas submitted, the proposal from Children’s HealthSM Children’s Medical Center Dallas and the University of Texas Southwestern Medical Center led by Dr. Lana Harder entitled, “Utilizing Brain Imaging to Understand Cognitive Dysfunction in Transverse Myelitis” was selected as the first research project to bring to “the crowd” for funding. The project launched to the public on www.consano.org today.
“This research project is the result of a partnership between clinicians and patients. We would have never made the discoveries we have without the incredible dedication of our patients and families. We are thrilled for the unique opportunity to advance this work and to bring scientific and patient communities together to seek answers about this rare condition,” says Dr. Harder, Assistant Professor of Psychiatry, and Neurology and Neurotherapeutics at UT Southwestern.
“We are excited to partner with a collaborative organization like The Siegel Rare Neuroimmune Association to help us bring the patient voice to the research funding process,” says Consano founder, Molly Lindquist, who created Consano after her own diagnosis with breast cancer.
“We are thrilled to partner with Consano as they have created an exceptional opportunity to expand research in a rare disease community. Their approach is both innovative and wonderfully collaborative. By beginning the process in the patient community and by giving this community and the general public the opportunity to invest in this important research, Consano creates an effective way for patients to guide those projects that they believe will most directly impact their quality of life. The project that was chosen represents a significant endeavor, as it deals with one of the least understood symptoms of TM, cognitive dysfunction, and could dramatically impact both the diagnosis of TM and how we think about the disease process, if evidence of inflammation is, in fact, found in the brain,” says Sandy Siegel, Founder and President of SRNA.
About Consano
Consano is the first 501(c)(3) crowdfunding platform focused solely on medical research campaigns. To learn more about Consano, or to make a directed donation, visit www.consano.org or visit us on Facebook (www.facebook.com/Consano) and Twitter (@Consano).
About The Siegel Rare Neuroimmune Association
The Siegel Rare Neuroimmune Association (SRNA) is a not-for-profit international foundation dedicated to the support of children, adolescents, and adults with a spectrum of rare neuroimmune disorders – Transverse Myelitis, Neuromyelitis Optica and Acute Disseminated Encephalomyelitis. Membership of SRNA includes individuals with these rare disorders, their family members and caregivers, and the medical professionals who treat individuals with these disorders. SRNA currently has over 10,500 members from more than 80 different countries and has a large number of support groups across the United States and around the world. SRNA empowers families, clinicians and scientists through education and awareness programs and supports novel research and training of clinician-scientists focused on rare neuroimmune diseases. More information is available at https://wearesrna.org.
For media inquiries or additional information:
Molly Lindquist, Founder & CEO
[email protected]
503-200-4965
www.consano.org
