''I Stay Home For Rare'' was launched in April 2020 to help people living with rare diseases and economic challenges during COVID-19. In response to the COVID-19 pandemic, Living in the Light, a patient advocacy company that specialises in rare disease storytelling through photography, narrative journalism and documentary video, launched I Stay Home For Rare , a campaign and fund to provide immediate financial relief and assistance to members of the rare disease community.
We are a small but mighty team leading this effort
In the first week of the campaign, I Stay Home For Rare formed partnerships with 12 different patient advocacy organisations nationally and raised over $45k, enough to significantly help 30 families pay their rent, buy food, and for some, provide vital therapies for their children who have lost access due to the pandemic.
We are raising and distributing emergency funds as quickly as possible as we adjust to this new global landscape
One unique aspect of the campaign is Living in the Light’s commitment to empowering families and individuals to share their stories and to openly address the isolation often associated with having a life-limiting condition—something many people are now dealing with for the first time due to social distancing protocols. The company is conducting ongoing interviews with members of the rare disease community internationally and sharing excerpts of their stories through social media and online platforms.
Stories highlight these challenges such as: a blind social worker living with Leber hereditary optic neuropathy who describes the difficulty of obtaining groceries amidst the backlogged food delivery services he relies on; a graduate student and poet with sickle cell disease who has been told to forego the outpatient pain management he needs in order to function; and an immunocompromised senior management partner at Google living with Duchenne muscular dystrophy who continues to work, but now lives in social isolation with his caregiver who is needed to help with routines to maintain lung function.
Sharing stories of resilience has been at the foundation of Living in the Light’s mission since 2012.
In solidarity with the rare disease community, the company has brought their expertise in narrative medicine and community organising to expand the patient advocacy efforts of numerous biotech and pharmaceutical companies, universities, and national patient organisations.Through the campaign website www.IStayHomeForRare.org one can make a tax-deductible donation or apply for funds, which are being distributed in grants of up to $2,500 per family/household. In addition to leading this effort, Living in the Light made an initial contribution of $10,800 to begin the first funding series.
There are valuable and vulnerable lives that depend on our collective effort right now. Regardless of the size of this campaign, we wanted to do something to advocate for our rare disease community during this unprecedented time, we welcome the support of industry to join us in fulfilling their corporate
For more information about 'I Stay Home for Rare' go to the website or contact Levi Gershkowitz using the buttons below.
To stay up to date with the campaign follow #istayhomeforrare or find Living in the Light on Instagram at @frompatienttoperson.
Rare Revolution Editor