A Message from Our Executive Director
As February 28th is Rare Disease Day we are using the month of February to raise awareness and funds to support our families and their children that have rare diseases. We are trying to pack the month with opportunities to support Better2gether RVA and are excited about the many community partners that are supporting Better2gether RVA this month.
Here are the fun ways Better2gether RVA is engaged in the community and ways you can help. Thank you for your participation in these activities during this important month.
Stephanie Becker
Rare Disease Day
Every year, the last day in February is designated as Rare Disease Day. Better2gether RVA recognizes Rare Disease Day to help bring awareness for the 25-30 million Americans impacted by rare diseases.
What is a Rare Disease?
A disease, disorder, illness or condition affecting fewer than 200,000 people in the U.S.
Did you know?
- There are more than 7,000 rare diseases impacting 1 in 10 Americans. It is believed that more than half of them are children.
- Rare diseases impact more people than cancer and AIDS combined.
- Studies suggest that 4.8 years is the average amount of time it takes for rare patients to receive an accurate diagnosis.
- Approved treatment exists for only about 5% of rare diseases.
- Approximately half of rare diseases don’t have a specific foundation dedicated to supporting or researching these disorders.
- Over half of families with children with rare diseases will incur direct medical expenses not covered by insurance.
- 7 out of 10 patients and caregivers have reduced or stopped their professional activities due to their rare disease or their family member’s rare disease.
People who suffer from a rare disease often face:
- Devastating medical problems and symptoms
- Difficulty getting a clear diagnosis
- Limited availability about information related to their condition
- Limited or no treatment options
- Feeling alone or isolated
Source: NORD National Organization for Rare Disorders
Better2gether RVA is committed to providing support and resources to families of children battling rare and complex medical challenges.
For more information about rare diseases, please visit: www.RareDiseases.org
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Partnership with Burger Bach to Promote Awareness of Rare Diseases
February 28, 2021 is Rare Disease Day. Rare diseases impact 1 in 10 Americans – over half are children. This month, Better2gether is partnering with Burger Bach’s Give Back program in honor of Rare Disease Day.
Burger Bach is a New Zealand-inspired gastropub serving award-winning gourmet burgers, as well as seafood, salads, fresh-cut fries, specialty craft cocktails, wines and craft beer.
Have a night off from cooking and support Better2gether RVA!
Burger Bach Give Back
During the month of February, Better2gether RVA will receive $1 for every Burger of the Month (French Dip) sold by Burger Bach.
- All four Richmond-area Burger Bach restaurants will be participating in this event (Midlothian, Carytown, Short Pump and Charlottesville).
- You can also choose to donate without purchasing the Burger of the Month if you want to order another item from their menu and still give back.
We are grateful for our partnership with Burger Bach this February and hope you will join us in eating great burgers in support of Better2getherRVA. To learn more about Burger Bach, please visit: https://theburgerbach.
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$25 Kroger or Walmart Gift Cards
Better2gether is collecting 102 – $25 Kroger or Walmart Gift cards – in the month of February to give to their families.
Each family will receive 2!
Go to Walmart.com or Kroger.com and purchase a $25 gift card online. You can have it shipped to Better2gether RVA for free (PO Box 29351 Henrico, VA 23242).
Here are the links to order a gift card:
- Kroger – https://giftcards.kroger.
com/our-store-cards/kroger - Walmart – https://www.walmart.com/ip/
Scrapbook-Fruit-Walmart-Gift- Card/193586255
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Get a Home OR Auto Loan Quote
Starting February 1st, RBI Services will donate $10 to us for every Home OR Auto loan they quote, or $25 for quoting both!
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Help Better2gether RVA Win Cash Prizes & Publicity!
We entered a photo into the Nonprofit Insurance Alliance’s Annual Photo contest. This photo contest is organized by Nonprofits Insurance Alliance.
Voting is easy – cast your vote between February 1-7, 2021. Each person may vote once during the contest period. Thanks for your support!
Vote Now
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Save the Date!
The 2021 Better2gether RVA Charity Classic will be held May 13th at The Golf Club at The Highlands. Sponsorship packages are available starting January 3rd.
Please reach out to Stephanie Becker at stephanie@better2getherrva.org if interested in becoming a valuable sponsor!
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Amazon Smile
An easy way to support Better2gether is to shop through Amazon Smile and select Better2gether as your charity. AmazonSmile is a simple way for you to support your favorite charitable organization every time you shop, at no cost to you. Sign in to smile.amazon.com on your desktop or mobile phone browser. Go to Your Account and select the Charity. Better2gether will be listed as an option. As a result of you shopping through Amazon Smile, Amazon will donate a to Better2gether for every purchase you make!
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There are thousands of families in RVA caring for a child with a medically complex illness who have no non-medical support. Please consider donating today so Better2gether can meet the needs of these deserving families and children.
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About Better2gether RVA
While support services abound in Richmond for families of children fighting well-known illnesses like cancer and juvenile diabetes, currently nothing exists for families of children battling more rare and complex illnesses. Better2gether RVA, is dedicated to the belief that all families of children battling illness — regardless of their diagnosis — deserve access to resources and support services. Since 2017, the organization has provided mentorship, counsel and recreational programming for families of children diagnosed with complex medical illnesses, plus valuable resources for treatment and its associated costs. Learn more at www.better2getherrva.org.
