who do you stay home for?
#IStayHomeForRare join us in solidarity with those staying home protecting the lives of children, family members, and friends living with rare diseases.
In support of gender-balance and acknowledgement that some of the best documented responses to the Coronavirus internationally have come from women leaders (see recent Forbes article), our Funding Committee is composed entirely of women, all of whom are passionate patient advocates who are volunteering their time to review all applications and deliberate on grants funded. If you have any questions regarding this comittee or their process, please contact us: firstname.lastname@example.org
Taylor Kane is a 21-year-old carrier of the X-linked disease Adrenoleukodystrophy (ALD) and a momentous leader in a new era of patient advocacy. Her father, Jack, was diagnosed with ALD when she was three-years-old, Jack's condition quickly deteriorated, and he was completely bedridden for many months, unable to talk, walk and swallow, or understand much of what was going on around him. He died when she was five. Taylor became an advocate for ALD families at a young age, helping to raise over $200,000 for ALD research. When she was in high school, she lobbied the senate and assembly in her home state of New Jersey, to introduce and pass a bill requiring the screening of newborns for ALD. She subsequently testified before both houses in support of the bill, and petitioned the governor to sign the bill into law, which he did in 2013.
Taylor founded Remember the Girls after learning that more than 80% of female ALD carriers go on to develop physical symptoms--sometimes severe ones, and that many carriers of the other X-linked recessive disorders are similarly affected. She understood that these female carriers, as a group, are often overlooked by the medical community, omitted from clinical trials, and have little peer or other support. While Taylor fervently believes that it is vital to continue to search for treatments and cures for the males who are typically more severely affected by these genetic diseases, she also believes it is important to remember the girls!
Ola Ojewumi is a graduate of University of Maryland, College Park with a BA in government and politics, as well as a double transplant survivor. As a student, she founded two nonprofits, the Sacred Hearts Children’s Transplant Foundation and Project ASCEND. These organizations provide college scholarships to low-income students, funding for women's education programs, and distributes teddy bears and books to children awaiting organ transplants across the United States.
As a public speaker, she has worked with MoveOn.org, Planned Parenthood, and Healthcare Voter. Her advocacy topics include equal access to affordable healthcare and opposing the repeal of the Affordable Care Act (ACA). A young political powerhouse herself, Ola has given speeches alongside politicos such as House Majority Leader Nancy Pelosi, Senator Cory Booker, House Majority Whip Steny Hoyer, Senator Menendez, and more. As a political commentator, she has frequently appeared on PBS and Democracy Now to fight for the rights of women, people of color, and the disabled.
Ola and her advocacy work have been praised by The Clinton Global Initiative, MTV, Intel, Glamour Magazine, and The Huffington Post. Her writing has also been published by CNN, The Huffington Post, Marie Claire, Glamour, and SELF. In addition, she has served on boards for nonprofits founded by General Colin Powell and musician Lady Gaga.
Beth Aselage is certified as a Professional Patient Advocate in Life Sciences, and has almost seven years of experience working in the life sciences industry, specializing in rare disease patient advocacy and strategic alliances. An Advocacy Relations Consultant for Gossamer Bio, Beth also works with a number of other biotech and life science companies based out of San Diego, CA. Formerly, a Senior Patient Advocacy & Alliance Management Specialist at Retrophin, Beth was responsible for identifying and incorporating new preclinical stage research programs into the company’s corporate pipeline by collaborating with patient advocacy organizations, and top research institutions. An emerging leader in patient advocacy partnerships in industry, in 2017 Beth led efforts in execution of the first of kind collaborative research and development agreement (CRADA) between partners in advocacy, industry, and researchers at the National Institutes of Health (NIH). Beth remains committed to supporting and advocating on behalf of the rare disease community, and is currently on the Board of Directors for the Little Miss Hannah Foundation.
Anna Laurent is a Prevention Education Specialist at Lotus Sexual Violence Resource & Children’s Advocacy Center. She designs, facilitates, and tracks evidence-based prevention education programs across the Purchase Area region. Born and raised on a family farm in Kentucky, she was diagnosed with Alagille Syndrome as an infant and began advocating for those impacted by rare diseases and disabilities at a young age. After becoming involved in numerous patient advocacy organizations, she found a lack of resources supporting young adults and this ignited her passion for advocating for the young adult voice to be heard. This led to Anna becoming the Head of Programs and Initiatives at Our Odyssey, an organization connecting young adults impacted by rare or chronic conditions with social and emotional support in the hope of improving their quality of life. She plans to continue advocating for young adults, rare disease, and disability rights for years to come!
Olivia Rowbottom is an intern for Cure CMD (Congenital Muscular Dystrophy), an activist within the rare disease community, a member of YARR and co-leads a community service program for students at Guiding Eyes for the Blind. Her passion for rare disease advocacy was inspired by a family member with CMD. She has attended and participated in Cure CMD’s Scientific and Family Conference, raised money for Canine Companions for Independence and was a Team Captain for Memorial Sloan-Kettering Cancer Center’s Cycle for Survival event in support of Rare Cancer Research.
Hannah Yale is an activist within the rare disease community. Not a patient herself, Hannah has been exposed to the struggles of rare disease patients since early childhood when her father was diagnosed with mucous membrane pemphigoid. At age 14, Hannah began attending RDLA’s Rare Disease Week on Capitol Hill, and has since been a patient advocate for the International Pemphigus & Pemphigoid Foundation. Hannah is also a member of YARR, as well as an activist and speaker for women’s rights, gun violence prevention, LGBTQ+ rights, and mental health awareness.