Two Local Walks Support the Medical Community in a BIG Way!

In the month of October, our county’s expansive community of individuals with disabilities, parents and family members, friends and loved ones, recognized both Disability History & Awareness Month and National Disability Employment Awareness Month, as well as National Down Syndrome Awareness Month and Spina Bifida Awareness Month. We also acknowledged Mental Illness Awareness Week (Oct. 3­-9) and World Cerebral Palsy Day (Oct. 6). Recognition months, weeks and days are a fantastic opportunity to raise awareness about important issues, policies and programs impacting our communities.

Two groups in particular deserve a huge, congratulatory (virtual) high-five for the awareness raising, community advocacy and outreach accomplished through their annual walk/run events in October 2021.

The Seattle WALK to END Hydrocephalus is a 5K run/walk held at Magnuson Park in Seattle. The walk brings together the regional community of people living with Hydrocephalus, their families, friends and caregivers, to connect, raise awareness and support the Hydrocephalus Association, a national advocacy organization.

Hydrocephalus is a neurological condition caused by an over-accumulation of cerebrospinal fluid in the ventricles of the brain. This build-up of fluid causes pressure on the brain, which can be fatal if untreated. Hydrocephalus affects over 1 million Americans, of all ages, due to a variety of causes. There is no cure for hydrocephalus, and the current treatment involves (often multiple) brain surgeries to ensure that the cerebrospinal fluid is able to drain from inside the brain. Learn more about Hydrocephalus at hydroassoc.org.

Every year, more than 14,000 people participate in a WALK to End Hydrocephalus at over 40 locations across the United States. The Seattle WALK is one of the largest of these events. Click here to view highlights from the 2021 event.

The 25th Annual Puget Sound Buddy Walk was held on October 10th at Downtown Bellevue Park. The annual event is organized by the Down Syndrome Community of Puget Sound.

Down syndrome occurs when an individual is born with an extra copy of chromosome 21. Down syndrome is the most common chromosomal condition. In the United States, one in every ~700 babies is born with Down syndrome. Learn more at ndss.org.

The National Buddy Walk® program was founded in 1995 by the National Down Syndrome Society as a way to celebrate Down Syndrome Awareness. Today, over 300,000 people participate in more than 250 Buddy Walks worldwide. The event is now, not only a public awareness program, but also an advocacy event for the Down syndrome community. The local Buddy Walk is the largest event of the year for the Down Syndrome Community of Puget Sound, a nonprofit organization working to empower people with Down syndrome and their families through education, outreach and community building programs.

Does your medical community or diagnosis-specific organization hold an annual walk/run to raise awareness? We would love to know more about it? Share with us at whitney@arcsno.org.

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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 three-year-old son Malachi and husband Jason in Lynnwood. Connect with her online at whitney@arcsno.org.

The Purple Pumpkin Project: Celebrating the Season While Raising Epilepsy Awareness

I love the month of October. It is, by far, my favorite month of the year. I love the changing colors of the trees, the crunching leaves underfoot, the crispness of the morning air, and the feeling of a thick, comfy sweater.

In October, I excitedly embrace all things pumpkin. I am *that* person, and I would proudly wear a pumpkin-loving badge of honor. (Shout out to all my fellow pumpkin-loving peeps out there!)

Naturally, for my family, October means a trip to a local pumpkin patch, pumpkin pies, pumpkin spice lattes, pumpkin muffins and pumpkin soups…

Pumpkins, pumpkins, pumpkins…

Most of them orange;

But, one of them, always, purple.

My three-year-old son Malachi has epilepsy. He was diagnosed with the condition two years ago, and it has proven the most challenging of diagnoses. It is incredibly scary to watch someone you love experience a massive seizure, and, for many people, epilepsy is difficult to control. It is ever-present and threatening.

In the United States, over 3.4 million people live with epilepsy. Epilepsy is diagnosed when an individual experiences two or more unprovoked seizures separated by at least 24 hours; or, after one seizure where there is a high-risk of future occurrence. About 1 in every 26 people in the United States will develop epilepsy at some point in their lives. It is much more common than most people believe.

For six out of every 10 people with the condition, the cause of their epilepsy is unknown. One-third of people with epilepsy live with uncontrolled seizures because the medications currently available to prevent seizures do not work for them.

Epilepsy can also be dangerous. For people with epilepsy, their overall risk of dying is 1.6 to 3 times higher than the general population. In some cases, epilepsy itself can cause death. (Learn more at epilepsy.com)

For these reasons, it is critical to raise awareness about the impact of epilepsy and to support advanced medical research and programs to develop new and better treatment options.

This is where the purple pumpkins come in…

The Purple Pumpkin Project is an annual, awareness-raising campaign of the national Epilepsy Foundation.

The Purple Pumpkin Project was founded in 2012 by Ron Lamontagne, the father of a child with epilepsy, as a way to spark conversation with others about the impact of epilepsy for his son and their family. Ron created a Facebook page about his idea, which quickly expanded, reaching all 50 states within just two days. Today, these purple pumpkins provide an opportunity to engage others in conversation whenever they ask: “Why is your pumpkin purple?”

To participate in the Purple Pumpkin Project, families simply paint a pumpkin PURPLE. Any shade of purple will do! Then, they can use their pumpkin to raise awareness or engage in fundraising efforts to support the Epilepsy Foundation. Some groups hold purple pumpkin decorating parties; others host unique, pumpkin themed events. The Epilepsy Foundation offers people a platform to create a personal fundraising page, where they can post photos of their purple pumpkins and share their stories. The ultimate goal: To END EPILEPSY.

For my family, ending epilepsy is a dream. We hope that, one day soon, epilepsy related seizures will be entirely preventable. We hold hope for new treatment options and continued advancement in our understanding and knowledge of this condition. We hope for these things for Malachi, and for everyone out there touched by epilepsy.

Until that day arrives, every year in October, we will continue to paint our pumpkins various shades of PURPLE.

AROUND THE ARC: NEW HIRES

Whitney Stohr — Parent to Parent Coordinator / Sibshop Coordinator

The Arc of Snohomish County is happy to welcome Whitney Stohr to our team!

A Message from Whitney:

My name is Whitney Stohr. I am a mom and wife, family-caregiver, community volunteer and advocate for social justice, equity and inclusion. I am a new face here at The Arc of Snohomish County as I am stepping into the role of Parent to Parent Coordinator and working with the Sibshops program.

My new role at The Arc is something of a career transition as I previously worked in community engagement and economic development. I am an attorney by training with experience in public policy, and when my son Malachi (age 3) was born with a disability and complex medical needs, my interest in policymaking began to veer in the direction of disability justice, healthcare and inclusive education policy, community accessibility and universal design. In my free time, I serve on the Family Advisory Council at Seattle Children’s Hospital; the Parent Advisory Group for the Washington State Department of Children, Youth and Families (DCYF); and, locally, as a member of the Snohomish County Children’s Commission and the City of Lynnwood Parks & Recreation Board. I also volunteer with the Spina Bifida Advocates of Washington State (SBAWS) and Spina Bifida Association of America.

I live in Lynnwood with Malachi, my husband (Jason), and our two little dogs (Neptune & Marmalade). Jason direct e-commerce sales for a manufacturing company that makes accessibility equipment such as access ramps and other personal use items. Malachi attends virtual preschool through the Edmonds School District and, in our free time, we RV-camp together as a family. You can connect with us on Instagram @rollin.w.spinabifida.

Connect with Whitney by email, at whitney@arcsno.org, or by phone at 425-258-2459 x 106.