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“I Stay Home For Rare” Financial Assistance Campaign Launched by Living in the Light. Help for people living with rare diseases and economic challenges during COVID-19

NORTHAMPTON, MA—April 17, 2020—In response to the COVID-19 pandemic, Living in the Light, a patient advocacy company that specializes 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,” says Levi Gershkowitz, founder and CEO of Living in the Light. In the first week of the campaign, I Stay Home For Rare formed partnerships with 12 different patient advocacy organizations 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. Along with their fiscal partner, Cure CMD, the company is raising and distributing emergency funds as quickly as possible.

 

“Many have nowhere to turn for help,” explains Rachel Alvarez, executive director of Cure CMD. “Providing relief to these families will make an enormous impact on how or even if they get through this.” Alvarez, who was diagnosed at an early age with an unspecified congenital muscular dystrophy, later confirmed to be Collagen VI CMD. “The need is extraordinary and immediate. We must come together to do everything we can to advocate for those in need right now, to ensure that no one is left behind during this global crisis.

One unique aspect of the campaign is the 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. Telling stories of resilience has been at the foundation of Living in the Light’s mission since 2012. “True medicine happens at the confluence of seeing and being seen. As storytellers and artists, we are practitioners of narrative medicine. We aim to encapsulate the complexities that extend beyond a diagnosis and give voice to an often sidelined and silenced population,” says Gershkowitz. “When done right, visibility leads to access, and together, both promote healing and equality.”

 

In solidarity with the rare disease community, the company has brought their expertise in narrative medicine and patient advocacy to lead the charge in community organizing and getting immediate help to those in critical need. 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 upto $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. As we adjust to this new global landscape and the immense needs it creates, we are doing something impactful to advocate for the ones we serve,” says Gershkowitz. “We welcome the support of industry to join us in fulfilling their corporate responsibility to serve the rare community during this time. We are all in this together.”

 

To follow the campaign visit www.IStayHomeForRare.org, follow @frompatienttoperson on Instagram, @stayhomeforrare on twitter, #istayhomeforrare, www.FromPatientToPerson.com

 

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About Cure CMD Cure CMD was founded in 2008 by three parents whose children were affected by Congenital Muscular Dystrophy. Through close collaboration with scientists, doctors, dedicated volunteers, involved families, and generous donors, Cure CMD has achieved significant impact in its first decade as a nonprofit organization: Launched two clinical trials; Completed a five year natural history study with the NIH to identify clinical trial endpoints; Grew the Congenital Muscle Disease International Registry (CMDIR) to more than 2,600 registrants worldwide; Co-Funded over $2 million in research grants.
           

Media Contact: Trishna Amirault
Info@frompatienttoperson.com

Our Story

Living in the Light™ is a patient advocacy initiative whose mission is to empower families and individuals affected by rare disease to be seen and heard as they relay their stories and advocate for their needs. Utilizing the potency of fine art photography, compelling personal narratives, and engaging filmmaking, we strive to address the isolation families and individuals often feel, as well as educate the biotech and medical community about the realities of rare disease and the effect they have on families and daily lives.

 

Our passion is story. Since our founding in 2012, telling rare disease stories has been our sole focus. Because of our deep and long-held connections to the communities we serve, we are called during this time to act. 

 

Aligned with our decision to suspend all of our normal business activities and services requiring travel of any kind until national public health and state authorities declare it safe, we have started the I Stay Home For Rare campaign and fund in order to provide immediate assistance and support to those we care about and advocate for. In addition to mobilizing and running this campaign, we pledge an initial matching contribution of $10,800. In this time of collective vulnerability and heightened need, we believe that action is necessary and greatly appreciate all the support and guidance we have received so far in this shared effort. 

To learn more, visit our website: www.FromPatientToPerson.com.

The people and families featured in this site have all given their direct consent and permission to do so and are not the direct recipients of donated funds. They are however eligible to apply and to be selected through a nondiscriminatory process. 

The information provided in this site is for educational purposes only and is not intended to replace discussions with a healthcare provider. The information in this site does not constitute legal or medical advice of any kind.

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