In This Issue
- February: Rare Disease Awareness Month
- Upcoming: PTSO, District and Community Events
- IEP or 504 Meeting Feedback: Survey Link
- Become a member: We Need You!
February is Rare Disease Awareness Month
What is a rare disease? In the United States, any disease that affects fewer than 200,000 people is considered rare. There are nearly 7,000 rare known diseases. A large number of these are uncommon forms of cancer. Although each disorder alone affects a small number of patients, together they impact nearly 30 million Americans that’s about one in every 10 people. In the United States it takes an average of 4 to 9 years to receive a correct diagnosis. That creates certain challenges that all patients and families affected by rare diseases share. In addition to devastating medical problems and symptoms, people with rare diseases can feel isolated as they struggle to find information and connect with others like themselves.
Why are awareness campaigns important? They help improve public understanding and build community. Rare diseases are not so ‘rare’ – they exist everywhere – but they are still invisible to policy makers, healthcare providers, and other stakeholders in many places around the world. Much of what already exists to help support rare disease medical research and data sharing is largely because of patient driven advocacy and grass roots efforts. The biggest example of this is the Orphan Drug act which provided financial incentive for pharmaceutical companies to invest in treatments for diseases classified as Orphan diseases (Orphan Drug Act of 1983).
Medical professionals are trained to look for the most common answer to a problem to reduce the need for unnecessary testing. Although that may work fine for the majority of patients, that leaves patients with rare diseases with a misdiagnosis or no diagnosis that can impact their health and quality of life in the long run.
Rare Disease Awareness Month started in 2008. It is observed on the last day of February. There are 1,400 Organizations in 75 countries around the world that collaborate research and data on rare diseases. Of the 300 million people worldwide with rare disease, 50% are children. There are many websites to learn more about rare diseases and how to find resources: NORD, FDA, Rare Diseases, BMC, Unique,
Upcoming PTSO Events
Parent Support Group – February
Our next support group meeting is February 13th from 7pm to 8pm at the Camas Library, upstairs meeting Room B
Topic of discussion this month: Twice Exceptional and Neurodivergence as a strength. Led by Tori Watrous, M. Ed., LMHC. Adults only please.
Big Al’s Family Night: Sign up is full!
Visit with the Easter Bunny: March
Upcoming District Events
Camas School District Special Services Presents:
All-Student Wellness Program
Hear about upcoming events hosted by the Camas School District, featured resources such as transitioning to different levels of school, and links to watch, listen to, and read to help you and your family survive…and thrive!
jennifer.mcmillan@camas.wednet.edu
https://www.camas.wednet.edu/schools-resources/resources/student-wellness-program/
Upcoming Community Events
Inclusive Support Services NW: Game Night Every Saturday starting February 10th. 5:30 pm-8:30 pm. Big Al’s, Vancouver WA
Cost: $14 Transportation Included. Make some friend and have some fun!
To register please contact us: Kalouana@2be-Inclusive.com, 360-784-3991
Vega Gym: SENSORY FRIENDLY FAMILY GYM February 18th @ 11:30 am-12:30 pm. 840 NW 10th Ave, Camas, WA 98607
- Ages 3-18 on the 1st & 3rd Sunday of the month.
- For children and teens who are autistic or have intellectual or developmental disabilities.
- Participants must be accompanied by parent or caregiver at all times.
- Takes place at the 10th Ave. location.
- $10 per participant (includes parent/caregiver).
- Please refrain from wearing any fragranced products.Goal: to provide a quiet, safe, inclusive space for participants and their families to explore the gym on their own terms.
Peace NW: Dad’s Coffee and Conversation February 17 @ 9:00 am – 10:00 am
For fathers of children with a disability or special healthcare need. Build a community, gain support and add to your toolbox. For info and to register contact Theresa Van Pelt at p2pcc@peacenw.org
Peace NW offers many social and educational classes and events. You can find their February events HERE.
Love Serving Autism at Vancouver Tennis Center Sessions on Fridays. Ages 5-18
The Love Serving Autism classes teach children and adults with intellectual and developmental disabilities communication and life skills for functional independence on and off the courts. The participants engage in hand-eye coordination activities to improve motor coordination, stroke production drills to improve gross motor skills, and social interaction/word-of-the-day activities to improve communication and life skills. The lesson plans are progressive, with the participants continuing to learn new skills each week. Program Cost: $90 plus tax. You can register HERE.
Mtn Peaks Therapy Llamas & Alpacas: Therapeutic Farm Visits. Monday-Friday.
Besides the amazing work that Mtn Peaks Therapy Llamas & Alpacas does in our community they offer free 30-minute therapy sessions one-on-one on the farm. This allows those with sensory sensitivities, social anxieties, or unique schedules to be able to have one-on-one focused interactions with our most gentle llamas and alpacas.
You can register for a farm visit HERE.
Klineline Fishing Derby Special Needs Day Friday, April 12th. All kids day Saturday, April 13th. 1112 NE 117th St, Vancouver, WA
Registration opens February 14th.
Klineline Kids Fishing Nonprofit organization seeks to create the stewards of our future fisheries by introducing the youth of our community to the joys and thrills of fishing as both an individual and family activity, while also becoming more aware of our amazing outdoor environment and natural resources.
Where Is Bunny Sensory Bunny. Vancouver Mall. March 17th. Registration required.
Special Celebrations Egg Hunt Saturday, March 30th from 11:00 AM to 12:00 PM. 15815 NE 18th St. Vancouver, WA
Special Celebrations Egg Hunt is for all ages and abilities! Multiple fields to help keep our event sensory sensitive, place eggs at varying heights for all celebrators to participate and offer a candy exchange for celebrators with food allergies. March 30th 2024 Grounds open at 11:00 Egg Hunt will begin promptly at 11:30.
More Easter Events Coming Soon: Check the March newsletter and our Facebook page for updates
IEP or 504 Meeting Feedback
Would you like to provide anonymous meeting feedback regarding your IEP/504 meeting experience? What worked and what didn’t? We will continue to get data from this survey throughout the year to share with the district. *****Please click on the button below to complete it anytime.
Important links
