We are looking for Black young adults with special health needs and parents for a workgroup on culturally sensitive health care.
What should culturally sensitive health care look like for Black young adults with special health needs as they transition from pediatric to adult health care?
We are looking for your insights and ideas from your experience receiving health services as you transition from pediatric to adult health care. Your ideas will be used to help create education resources for health care providers on culturally sensitive health care practices, and tools for youth and families to support successful transition to adult health care. This project is through the Oregon Center for Children and Youth with Special Healthcare Needs at OHSU (OCCYSHN).
We are looking for 2 Black young adults (16 to 25) with special health care needs or complex medical needs who have experienced (or are experiencing) transition from pediatric to adult health care.
We are looking for 3 Black parents of young adults with special health care needs who are working on (or have gone through) transition to adult health care.
Participate in a workgroup (3 sessions) with other young adults and parents- focusing on culturally sensitive health care during transition to adult care.
The first 90-minute workgroup meeting will happen around the end of March (date TBD) in the Portland area.
Participate in two workgroup meetings on April 22-23 (sessions 2 and 3; dinner and meeting on Saturday evening; breakfast and meeting on Sunday morning).
Participants will receive a $250 stipend for their participation (half at the first session, and the remainder during the second gathering).
The first workgroup session will be scheduled for late March/early April based on the schedule/availability of the participants.
The second and third workgroup sessions will be part of an overnight gathering on April 22-23 at the Monarch Hotel (near the Clackamas Mall). The workgroup participants will be from the Black and Latino communities. Saturday will include dinner (@ 5:00) and a workgroup session. Sunday will include breakfast and a workgroup session/wrap up. We will end at 11:00 AM.
Each participant will have a reserved hotel room for April 22nd to accommodate them and any family members or caregivers (rooms can accommodate up to 4 people). Dinner and breakfast will be provided for participants and accompanying family members/caregivers.
We hope this message finds you in good health and spirits.
We are reaching out to community partners and friends to get your support in helping families and individuals in our community who are affected by sickle cell disease. We are writing to request your support in advocating for HB2927- To establish a system of support for individuals impacted by Sickle Cell Disease. Rep. Travis Nelson is the primary sponsor of this bill, and the team at SCAFO has been working with him in crafting this initiative. The House Committee on Behavioral Health and Health Care is holding a hearing on this bill on Wednesday March 1st. Having the committee hear the voices of our community will go a long way in moving this bill forward.
This bill would establish a Statewide Steering Committee on Sickle Cell Disease. Enacting this measure would direct the Oregon Health Authority to devote the attention and resources needed towards understanding and responding to the physical, social, and emotional needs of people affected with sickle cell disease and their families. We have provided a one-page summary for your reference and use. We have also included the full text of the bill for your edification.
Sickle Cell Disease (SCD) is an inherited blood disorder that affects over 100,000 Americans — and millions worldwide. It is one of the most prevalent genetic blood disorders in our country. According to the CDC, approximately 1% of children with SDC will die within the first 3 years of life — often from stroke and without warning. Some two million Americans are carriers of the sickle cell gene. Yet, it has been underfunded and under researched for decades.
The Sickle Cell Anemia Foundation of Oregon is the only statewide non-profit direct service organization focused on the needs of people affected by Sickle Cell Disease for the past 40 years. We serve clients from WA, ID and AK as well, when the need arises. We have been dedicated to educating vulnerable populations, serving people in need, and encouraging testing for the presence of this painful and life-threatening, but treatable disease. We are currently charged with providing support services to families of newborns affected with SCD as part of the newborn screening efforts funded by HRSA.
Here are four ways you can put your support into action:
Agree to support this bill- notify us and allow us to identify you as a supporter (e-mail or text).
Share your organization logo and allow us to use it in identifying community supporters.
Provide written testimony so your voice can be heard directly- you can also submit testimony on behalf of someone else (see below for submitting written testimony).
Pass this information on to others- they may be interested in supporting this effort.
How to submit written testimony
Go to: https://olis.oregonlegislature.gov/liz/2023R1/Testimony/HBHHC (select the “House Committee on Behavioral Health and Health Care” if it is not already visible)
Select the Meeting Date: 3/1/23
Enter your name, e-mail address, and your organization/or city where you live (you can submit testimony on behalf of someone else).
Type in your testimony or upload a PDF copy of your testimony
If you have any problems or would like us to submit your testimony for you, please contact us (firstname.lastname@example.org or email@example.com)
All people with sickle cell disease and their family members are welcome to join us in a space of caring, support, and uplift. Each month you will:
# have a chance to speak your truth
# receive support from others who understand and care
# receive inspiration from others have a chance to support others
# build your network of friends and supporters
# receive information to help you live a fuller life
We meet on the 3rd Thursday of the month at 7:00 PM (PST).
Please click the registration link to sign up for group — we can send you group reminders, updates, and information.
SnowCap Community Charities is a philanthropic organization created to provide food, clothing, advocacy and other services to our neighbors in need.
SnowCap welcomes donations of food, clothing, baby formula, pet food and hygiene items at their drive-thru donation center all year round! The donation center is located at 17788 SE Pine St., Portland, Oregon, 97233. The drive-thru is open Monday-Friday, 9am to 3pm.