ANGEL AID CARES began as the brainchild of Cristol Barrett O’Loughlin, out of a shared desire to pay tribute to her own family experience and to uplift others in need. Growing up, Cristol was no stranger to the rare disease community; three of her brothers — Randy, Jared, and David — were diagnosed with mucopolysaccharidosis type II (MPS II/Hunter syndrome), a rare genetic disorder.
When I spoke with Cristol about her experiences, and how she has harnessed those to empower others through ANGEL AID CARES, one particular line stuck out to me:
“Suffering sows the seeds of empathy.”
As many of us know, there is no lack of suffering in the world. Faced with stress, medical issues, isolation, and more, it can often feel as though we are alone. But ANGEL AID CARES wants to address this by providing support, empathy, and community for rare caregivers, particularly Rare Mothers.
So join Patient Worthy in learning more about ANGEL AID CARES; how you can best discover and apply the tools of self-care; and why it is so important to bring the plight of the caregiver to the global conversation.
Cristol’s Story
Data suggests that approximately 82% of primary caregivers are mothers. Thus, caring for family members with rare diseases or conditions often falls on their shoulders. Cristol saw this in action within her own family.
She grew up with four brothers, three of whom were diagnosed with MPS II. During her upbringing, her mother Phyllis was a strong and staunch support system, providing love and care for her children. Unfortunately, MPS II is often fatal in young adulthood; all three brothers passed away as teens.
Cristol was moved by her family experience and saw the incredible caregiving burden placed on rare mothers. She explained about her mother:
For 57 years she has been a caregiver. For Rare Mothers, the caregiving journey often extends beyond the life of their patient child. Their grief, their identity as a caregiver, does not end until the end of their lives.
Thus, the idea for ANGEL AID CARES was born.
ANGEL AID CARES
Initially, ANGEL AID was launched in 2000 with a mission to raise funds for the National MPS Society. Through this fundraising, Cristol hoped to advance MPS-related research, potentially discovering new treatments or cures. ANGEL AID raised a significant amount of funding for MPS research grants. In fact, early ANGEL AID sponsored research evolved into an FDA-approved treatment for young men with Hunter Syndrome. Today, young men on active treatment are now going off to college, an opportunity her brothers never had the chance to experience. Cristol shared:
I have no doubt the pharmaceutical, biotechnology, academic and research communities will find more treatments, and ultimately cures, for rare diseases in our lifetime. In the meantime, who is supporting the mothers? These women are home-bound, isolated, scared, often forced into performing skilled-nursing roles they never imagined would be part of their vision of Motherhood. ANGEL AID now exists to support these women.
So, 17 years after its inception, ANGEL AID became a 501(c)3 organization. Now, this beneficial nonprofit organization works to provide emotional support and personal connection for the mothers of children with rare diseases. ANGEL AID is the leader in mental health and wellness services for Rare Mothers, while simultaneously supporting the community with the help of other umbrella organizations such as the National Organization for Rare Disorders (NORD) and Global Genes.
Becoming a “Rare Mother” and the Need for Self-Care Assistance
Altogether, there are over 350 million people worldwide living with one of the 7,000 existing rare diseases. Nearly half of these people are children, placing an immense burden on caregivers to provide love and support; to learn about the conditions; to educate others, including (occasionally) medical professionals; and to advocate for research to find treatments. Rarely can rare mothers find time to focus on their own needs.
As of right now, no rare disease has a cure and only around 5% of rare diseases even have a treatment option. Thus, it can be incredibly difficult for parents when a child is diagnosed with a rare disease or condition. Many people might question, “Why me? Why our family? Why is this happening?”
When trying to answer these questions, it can be hard to focus on oneself or to find ways to relieve the burdens. Often, this burden is compounded by additional external stressors: homeschooling or working from home, medical uncertainty, financial burdens. A Rare Disease Caregiving infographic explains that 89% of caregivers must educate medical professionals about the rare disease. 67% feel that caregiving can sometimes be emotionally stressful, and 53% report feeling isolated or alone.
For Cristol, one of the first steps to finding support is to consider oneself a Rare Mother. She explained:
A ‘Rare Mother’ is not what a mom would typically identify as. But when someone realizes they’re a Rare Mother, the whole world changes. They realize that their struggles are bigger than their family or the disease being faced. They realize that they aren’t alone.
Once they make this determination, it is easier to reach out, make connections, and build resilience.
ANGEL AID Goals
ANGEL AID seeks to relieve stressors – and reduce isolation – through one important goal: to care for the caregivers. As Cristol explained, caregiving is a lifelong journey. More so:
Caregivers need an extra layer of support, care, and uplifting. While caregivers are often providing support for their families, the question, ‘What am I going to do to support myself?’ is often at the bottom of their list.
Although many rare disease organizations and patient advocacy groups exist, caregivers are often left out of the conversation or the focus on how they can better care for the patient, without extending the conversation to include their own emotional and physical health. But it is crucial to remind caregivers of the importance of self-care. Sometimes, it can be easy to pass up self-care. For example, the refrain, “I just don’t have time” is common in relation to giving up self-care. So, Cristol asked:
How can we reframe self-care as a daily need? How can we reframe specific activities as a self-care activity?
As the survivor of breast cancer, and living now 5 years cancer-free, Cristol holds a unique perspective on self-care and self-reflection, which she brings to the ANGEL AID CARES mission. The organization aims to empower self-care through syndicating wellness programs that offer Rare Mothers the opportunity to take time for themselves, even if just for an hour a week. Joining ANGEL AID’s many offerings is the ideal opportunity to not only achieve greater peace and self-care but to have others who can uplift you emotionally.
Want to learn more about the experiences of Rare Mothers? Check out Cristol’s TedX talk entitled “Caring for Caregivers.”
The ANGEL AID CARES Online Community
When you first join the ANGEL AID community, you’ll find yourself immersed in education and community support. ANGEL AID offers a “Rare Mothers Wellness Program,” which is a mobile-first and multilingual community portal. On the portal, you’ll find:
- Resiliency training, using The Sustainable Mom: A Guidebook for Rare Mothers by Dr. Laura Riordan
- Rare Mother-to-Mother support groups
- Storytelling as Self-care weekly workshops on Thursdays @ 10am PST
- Rare Mothers in Relationshipweekly workshops on Tuesdays @ 10am PST
- A wealth of other self-care resources, guides, and partners
Within the support groups, you will have access to insights from health and wellness experts, as well as opportunities to speak with other Rare Mothers. This is the ideal setting to share your thoughts without judgment. Cristol also described the support groups as:
Emotional relief in 60 minutes. This is maternal health and disease-agnostic self-care.
What this means is that the support groups are not centered around a specific rare disease; rather, the groups are meant to provide focused support by fostering personal connections, storytelling, and emotional self-care. In fact, many Rare Mothers have shared that they:
appreciate the opportunity to set the disease at the door and just be women supporting women at an empathetic level.
Microsoft Volunteers Care About Rare Mothers
In 2020, Microsoft even joined in on the effort. Microsoft employee volunteers donated over 400 hours of time to help launch the new RareMothers.org global community wellness portal.
Interested in joining the free ANGEL AID online community and sharing your authentic self with other Rare Mothers? You’ll have access to free weekly self-care workshops and meditations, free recorded meditations, a private group to talk with other caregivers, monthly Zoom meetings, and the Uplifting Gifting program, which sends free self-care items to your door. Sign up here to join this amazing community.
Additional Offerings
Outside of the “Rare Mothers Wellness Program,” ANGEL AID provides so many other helpful programs for Rare Moms. These include:
24/7 Crisis Text Support & Suicide Prevention Mental Health Program
As described above, over half of caregivers report that caregiving can be mentally and emotionally draining. More so, this stress can last beyond the child’s life. Thus, it is incredibly important to have resources available to suit the emotional and mental needs of caregivers. Currently, ANGEL AID CARES offers Level 1 text line support on its website. Moving forward, Cristol hopes to create a more comprehensive ANGEL AID Crisis Response System, using therapists for Level 2 sustainable support. Cristol explained that ANGEL AID seeks to:
Meet mothers where they are.
Typically, this is determined using a support scale ranging from 1-10. If mothers report 1-5 in feeling supported, this is often considered crisis mode. This is when support and help will center around suicide prevention or other assistance. If mothers report feeling 6-10, they are in wellness mode. During this time, mothers can focus more on self-care and resilience.
M.O.R.E: Mothers of Rare Experience
As described by ANGEL AID, M.O.R.E is: “a virtual wellness experience guided by professional clinicians and self-care experts specializing in rare disease parenting. You will gain experience, education, and empowerment to reconnect you with the woman you were before you became a rare mom.” Recently, ANGEL AID held the M.O.R.E Virtual Retreat. 24 Rare Mothers participated from six different countries.
During the retreat, Mothers had the opportunity to engage in a workshop with Dr. Laura Riordan, PhD, learning about mother-to-mother bonding, strategies to embrace change, self-care tools and rituals, and sensory self-care experiences. Additional weekly offerings including yoga and meditation, group work, and equine and art therapy.
These virtual (and eventually in-person experiences, following COVID-19), offer Rare Mothers the opportunity to get away. When many mothers admit that, “I just needed a little space. I need permission. I just needed to know it was okay,” ANGEL AID provides a chance to find comfort and solace in this community.
Global Family Resilience Survey
ANGEL AID partnered with the Indiana University School of Social Work to develop the Global Family Resilience Survey, which tracks the impact of long-term caregiving. By creating a repository of data, ANGEL AID can best understand what caregivers need – and where they are being most burdened – to better address these issues in the future.
Altogether, Cristol aims to have ANGEL AID act as:
Wellness experts, so you don’t have to be.
External Projects
ANGEL AID’s commitment to bettering the quality of life also extends past caregivers to patients directly.
For example, ANGEL AID created a Trauma-Less Needle Pokes Program for patients and caregivers, which the organization developed thanks to sponsorship from Horizon Therapeutics. In addition to teaching medical practitioners how to more easily inject patients or draw blood, it also teaches valuable lessons on reducing anxiety. Within this program, patients can also receive the ANGEL AID Wellness Kits featuring the BUZZY pain-management device, distraction cards, and meditations. As Cristol described it:
The BUZZY reduces pain without any intervention. It follows the theory that putting distractions between the pain and your brain can help make procedures less stressful.
Another program, the Who Am I? Young Adult Graphic Novel Workshop, patients are able to translate their rare diseases and characters into a graphic novella. The workshop, which takes place over a 6-week period, encourages patients to build connections and develop greater self-awareness through the process of artful storytelling.
All in all, ANGEL AID CARES is committed to making the world a better place for patients and caregivers, and to lightening the burden of a rare disease diagnosis.
Future ANGEL AID CARES Goals
In 2021, ANGEL AID supports families across 14 different countries. Soon, ANGEL AID is gathering a global consortium of industry partners, rare disease foundations, rare families, volunteers, and donors to recognize Rare Mothers across the globe. There will be an opportunity for sponsorship and for Rare Mothers to self-nominate for the upcoming International Rare Mothers of the Year Awards Ceremony; the chosen mothers will be announced on October 23.
Looking forward, Cristol hopes that ANGEL AID can expand its reach and connect 3.5 million Rare Mothersworldwideby 2025. Ultimately, the organization believes that a sustainable mother equals a sustainable caregiver, and it is time to make this more prevalent in the public eye. All Rare Mothers, regardless of background, can participate.
When asked why she did this work, Cristol smiled. She told me:
I want to be that galvanizing force, out there rattling cages, and bring the caregiver experience to the global conversation so that we can work together as a coalition. I want to involve all stakeholders – foundations, patient advocacy groups, caregivers, rare disease organizations, pharmaceutical groups. That’s the work that I was meant to do. A life of service committed to making a difference.
