Dear Supporters of a #Cure4BCM,
On December 3, 2024 join us for Giving Tuesday Fundraising!
THANKFUL for the support among ourselves to live our best lives while having an extremely rare Inherited Retinal Disease: Sharing our coping skills and Hope for a Cure!
The Core Value & heartfelt goal of BCM Families Foundation is to support and see achieved a Cure for BCM. Join us this December 3, 2024, as we come together for GivingTuesday to make a difference!
HOW TO DONATE:
1) Donate Online using PayPal or any major CREDIT CARDS or via a bank CHECK (US) payable to ‘BCM Families Foundation’. The check can be mailed to the following address:
BCM Families Foundation, PO Box 7711 Jupiter, FL 33468-7711 USA.
2) Create a Fundraiser on Facebook. You need a Facebook account at www.facebook.com
Click ‘Fundraisers’ on the left menu and select BCM Families Foundation as your choice of Nonprofit organization.
Current Funding Needs for 2025
Your support will directly contribute to the following essential programs:
- West Virginia University: we are continuing to fund Dr. Wen Tao Deng’s BCM research project at WVU.
- No-Cost DNA Test Program: $27,500 needed to provide free genetic testing for BCM patients. Learn more.
- Patient Registry Maintenance: $10,000 to maintain and enhance the international patient registry—vital for future clinical trials. Learn more.
- Search Engine Optimization Project: $6,000 to improve visibility and connect more families with resources.
- Support for Families: Assisting John Cavitt and Blue Gen Therapeutics Foundation with travel expenses for patients and hosting a national family meeting.
Some of these programs run annually, and your generosity ensures they continue making a lasting impact. Read Personal Stories from the BCM Community to see how your support makes an impact.
Download BCMFF GivingTuesday 2024 Banners here:
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BCM is a very rare disease and many men have spent a large proportion of their lives living with no diagnosis or alone with no contact with others in the same situation …. continue reading
How to earn a Matching Donation!
All donations by December 15 that meet criteria for a matching donation to BCM Families Foundation, can, together, provide a match total of up to $10,000!
Our heartfelt thanks to you for your support.
Frequently Asked Questions
1. Is this charity’s mission one that I support? What priority?
This is a personal decision that only you can answer. Many supporters of BCM Families Foundation have BCM and/or have sons or grandsons who have BCM. They have a personal stake in wanting a better future for loved ones. Additional supporters are needed: BCM is an extremely rare disease whose genetic correction can also impact cure of additional diseases.
2. Does this charity manage donations well according to impartial oversight measures? Does the charity value & publicly share external oversight (have “public transparency”)?
Yes. BCM Families Foundation, a 501(c)(3) public charity, is available on GuideStar, a website used by many Secretary of State offices in the USA to evaluate applicants seeking to fundraise in their state. GuideStar is also a resource for potential donors to check whether a charity manages its donations ethically and wisely. BCM Families Foundation has earned GuideStar’s Silver Medallion rating.
3. What percentage of donations are spent on the mission, versus on staff salaries + expenses?
100% of donations are spent on our mission #Cure4BCM. 0% of donations are spent on staff salaries. Volunteers operate BCM Families Foundation. The Board of Directors are all unsalaried volunteers who donate both their time and money to the Foundation.
4. What is this charity’s track record of making progress toward achieving its mission?
Superb! Since applying to become a 501(c)(3) public charity, a plan of specific sequenced steps has been in place to follow in order to reach a cure for Blue Cone Monochromacy. A BCM support and education website www.BlueConeMonochromacy.org was developed and is operated continually by our founder Dr. Renata Sarno. A Board of Directors as well as a Scientific Advisory Board of expert BCM Researchers were recruited, established, and continues. Development of mice having Opsin deletion BCM and mice with C203R BCM were arranged and funded by BCM Families Foundation along with a method for their distribution to researchers. Membership in NORD (National Organization for Rare Disorders, Inc.) was achieved at the Platinum level. A BCM Patient Registry has been designed, established, and is fully operational.
5. Are there special challenges this charity faces that deserve any special consideration?
The fact that Blue Cone Monochromacy is so rare, estimated to affect 1 in 100,000 people, has been extremely challenging in multiple ways but especially in raising funds.
6. How has this charity raised funds in previous years?
From a few large donors —most of these people have now reached the maximum donation amount for our charity to remain a 501(c)(3). Thankfully, a few others are emerging.
From people wishing to make a one-time donation.
From Recurring Donors, including a growing number of committed Monthly Donors.
From supporters’ fundraisers such as “instead of birthday gifts”, “instead of Christmas gifts”, “in lieu of sending flowers to a loved one’s funeral”, “instead of 50th Wedding Anniversary gifts”, “instead of wedding gifts”, as well as supporters’ annual « Giving Tuesday » fundraisers on the Tuesday after Thanksgiving.
After you have passed age 70 and a half years old, you may be required to make annual withdrawals from your IRAs and other tax-deferred accounts. Your tax professional or financial advisor can advise you of ways that you can gain substantial tax benefit by donating portions of these Required Minimum Distributions (RMDs) to recognized 501(C)(3) charities, for example BCM Families Foundation.
From grants or sponsorships, such as the Waldesian Church’s grant that has previously supported some ongoing expenses.
7. How aggressively does this charity seek donations? Does it pressure donors? Does it ask anyone to “give until it hurts”?
No pressure. BCM Families Foundation seeks to explain, rather than pressure, hoping that potential donors will understand and evaluate how they wish to distribute their available donation dollars to the charities and the missions that they value. We hope our mission is among these. Affordable small donations are definitely valued by our Foundation! —So many of the contacts to our websites are young parents whose baby has just developed nystagmus: definitely for us, it is about more than raising money. But to reach our mission, necessary expenses are reality.
8. What is the best way I can financially support the mission of BCM Families Foundation?
Two ways! Become a Recurring/Monthly Donor, please, giving the amount you can comfortably afford. To maintain our 501(c)(3) status, the number of donors matters as well as amount of donations raised annually. BCM Families Foundation is very grateful for our growing number of committed Monthly Donors. Be aware that regular, expectable donations allow our Foundation to better plan our budget & expenditures. Also, a second way is to participate actively in our « Giving Tuesday » fundraiser on December 3. Please help multiply our outreach by posting a « Giving Tuesday » fundraiser for BCM Families Foundation on your personal Facebook page.
9. Is there a recommended way to donate to the BCM Families Foundation?
BCM Families Foundation gratefully accepts donations in any method preferred by our donors. Checks may be sent to BCM Families Foundation P.O. Box 7711 Jupiter, FL 33468-7711 USA. Donate Online at https://www.blueconemonochromacy.org/donate/ using Pay Pal or any major credit card. Monthly Donors are people committed to ongoing support of our mission. Monthly Donors may conveniently use Pay Pal so that our charity will be directly notified of your gift.
