Show Your Stripes on Rare Disease Day, Feb. 28th

On February 28th, communities and families around the world recognize Rare Disease Day by raising awareness and advocating for issues and policies that impact the Rare Disease community.

A disease or diagnosis is considered RARE if it affects less than 1 in every 2,000 people. Around 300 million people are living with rare diseases worldwide, including 25-30 million Americans. Of over 7,000 identified rare diseases, around 70% are genetic diseases and, in the United States, some 90% lack an FDA-approved treatment option. Some rare diseases are extremely rare and have been diagnosed in only a few dozen, or even, just a handful of people.

Beginning in 2008, members of the Rare community joined together to form a global movement, recognizing Rare Disease Day as a pathway to raise awareness and advocate together on issues that matter. Each year, Rare Disease Day is observed on February 28th — or, on February 29th in Leap Years, the very rarest of days. Learn more at rarediseaseday.org.

In the US, the zebra is recognized as the shared symbol of rare diseases. On Rare Disease Day, the community is encouraged to wear striped clothing and accessories to show support and solidarity for those living with rare diseases.

Want to get involved?

1.  Learn more about rare diseases!

• National Organization for Rare Disorders (NORD) — org
• The Rare Disease Database — com/2uczvku4
• RareAction Network — com/3j5n6zee
• RARE Policy Issues State Report Cards — com/3mzamr3k

2.  Wear stripes and raise awareness!

Show Your Stripes on February 28th in support of those in our community living with rare diseases. It is also a great way to start a conversation and educate others about rare diseases. Snap a picture to show off your stripes and post to social media with hashtags: #RareDiseaseDay and #ShowYourStripes.

3.  Become an ally!

Educate yourself on the issues and policy priorities important to the Rare Disease community and sign up to receive notifications from RareAction Network about pending legislation and action alerts.

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Whitney Stohr is a Parent to Parent Coordinator at The Arc of Snohomish County. She is passionate about advocating for medically complex children and children with disabilities and their families. She is a mom and medical caregiver herself, who is energized by working closely with other parent/family caregivers. She lives with her four-year-old son Malachi and husband Jason in Lynnwood. Connect with her on Instagram @rollin.w.spinabifida. Contact: whitney@arcsno.org.

Creating a Self-Care Strategy in THREE Steps!

The buzz about “self-care” is everywhere!

It is difficult these days to access any social media platform without scrolling across one or two (or three or four…) mentions of self-care. Whether it is a friend sharing about her recent re-commitment to self-care following a particularly busy period of family changes (good for her!) or a news site sharing an article by a well-known expert in personal wellness, the reminders abound that self-care, despite its current buzz-worthiness, is both important and necessary for all of us.

That factor of necessity perhaps garners even greater truth when applied to the role of parenting. The day-to-day requirements of running a household, working and caring for young children and other family members rapidly absorbs whatever time you could possibly hope to find for a moment alone. Then you add in the medical, nursing, therapy and other responsibilities tied to the role of caregiving for a child with a disability, and… forget about it!

Self-care is often the very last thing on our minds as family caregivers of children with disabilities and complex medical needs. You get going, going, going and — all of a sudden — it is already 9 PM and you have no idea where the day went.

And yet… self-care remains as important for family caregivers as anyone else.

(I would argue that self-care is actually far more important for family caregivers than the general population based on research showing the heightened health risks and overall wellness challenges resulting from caregiving.)

And yet, still… it remains so hard to fit into your day. You know it is important. You want to focus on self-care and all the things that bring you joy, and your passions and your interests and your hobbies.... but, you have SO MUCH to get done! Every day.

I get it. As a family caregiver, this is a mental battle I fight with myself — Every. Single. Day. And then, I read another study about the impacts of caregiving on family caregivers, and it serves as another reminder that we MUST take care of ourselves. We MUST!

But, how?

If we think of self-care in terms of moments that bring us joy, however brief, and activities that lift our spirits, however simple, then the practice of self-care transforms into something attainable. If we give ourselves grace and view self-care as a practice that can grow with us through the years of caregiving, then we might learn to view self-care as a lifestyle, rather than an item to check off our daily to-do list.

Here are THREE STEPS to help you create a self-care strategy that works for you:

Step 1: Create a list of activities, interests and items that bring you joy. Begin by free-writing. Jot down whatever pops into your head. Consider activities or hobbies you love. What brings a smile to your face? Is it art, music, dancing, running or working with your hands? Do you like to read? What does “pampering” look like for you? Remember to include places and activities you enjoy outside the house. Add your favorite local hangouts to the list. Do you have a favorite coffee shop or bakery? Does a trip to the library renew your spirit? Is it swimming laps at the local aquatic center or volunteering at a nearby dog shelter? Write it down — whatever it is, no matter how big or small.

Step Two: Incorporate moments of joy into your day. Review your list and brainstorm where opportunities exist throughout your day to incorporate these activities to create moments of joy. This is self-care. Focus on the small things that can be easily integrated into your daily life. Ask yourself: What small changes can I make that will easily become self-care habits? Doing this will make self-care a *part* of your day, rather than something that must be done *in addition* to your day.

Step Three: Set achievable self-care goals. Now, consider longer term goals. Ask yourself: What would it take for my soul to feel fulfilled? Consider those items on your list that lend themselves to long-term practice, and create for yourself goals that, while achievable, may require additional planning and effort beyond your daily responsibilities. These are goals to work toward. It may take a while to fold them into your routine and that is completely expected. These are goals that can drive you and encourage you along your journey in personal self-care.

Note: This three-step strategy to conceptualize and develop a self-care routine was first presented at the “Caregiver Connections” support group meeting on February 15th, 2022. Caregiver Connections is a monthly, self-care centered support group for parents and family caregivers of children with disabilities. The group meets on the 3rd Tuesday of each month at 7 pm. For more information or to register, visit The Arc of Snohomish County event calendar online at arcsno.org/calendar.

Are you interested in creating a more in-depth self-care plan as a family caregiver? The Family Caregiver Alliance offers some great strategies in this article: tinyurl.com/37dnedbd.

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Whitney Stohr is a Parent to Parent Coordinator at The Arc of Snohomish County. She is passionate about advocating for medically complex children and children with disabilities and their families. She is a mom and medical caregiver herself, who is energized by working closely with other parent/family caregivers. She lives with her four-year-old son Malachi and husband Jason in Lynnwood. Connect with her on Instagram @rollin.w.spinabifida. Contact: whitney@arcsno.org.

Celebrating Parent Recognition Month — February 2022

Recognizing Erica Knapp, a Community Advocate and Mom of Three

In Washington state, the month of February is celebrated as Parent Recognition Month by Seattle’s Child magazine and the Washington State Department of Children, Youth and Families (DCYF) under proclamation of Governor Jay Inslee.

Each year, twenty-eight parents and caregivers across the state are recognized for the outstanding role they play in their families, schools and communities.

Congratulations to Erica Knapp, a Snohomish County parent caregiver, community advocate and a 2022 Unsung Hero. Erica lives in Arlington with her husband and three children.

Erica was nominated for the role she plays as a local leader and advocate for equity, diversity and inclusion. As the parent of a child with a developmental disability, Erica serves as a member of her local School Board and helped launch a parent group to provide resources and information to other families of kids with disabilities.

Another example of Erica’s community involvement from the award nomination page: “This winter Erica partnered with the city of Arlington to offer ‘sensory-friendly’ opportunities for kids with sensory sensitivities to enjoy the seasonal carousel without music and with shorter wait times. The outpouring of appreciation from parents demonstrated the need for this in the community.” Amazing work, Erica!

Read more on the Seattle’s Child website.

Celebrating Parent Recognition Month — February 2022

Recognizing Amanda Zamara, Snohomish County Mom of Two

In Washington state, the month of February is celebrated as Parent Recognition Month by Seattle’s Child magazine and the Washington State Department of Children, Youth and Families (DCYF) under proclamation of Governor Jay Inslee.

Each year, twenty-eight parents and caregivers across the state are recognized for the outstanding role they play in their families, schools and communities.

Join us in celebrating Amanda Zamara, a 2022 Unsung Hero and Snohomish County mom, who lives in Marysville with her husband Mitch and their two children Archer (age 5) and Aurelia (age 3)!

Amanda was recognized as a “super mom” who also gives back to her community as a volunteer Helping Parent and as a member of the Special Education Parent Advisory Council at her son’s school. She has participated in a University of Washington workshop designing autism-friendly libraries and recently advocated for families of children with disabilities during a round table discussion organized by U.S. Congressman Rick Larsen.

Read more on the Seattle’s Child website at tinyurl.com/2p9f2tnk.

Congratulations to Amanda Zamara!