Jada Bascom Foundation

Tens of thousands of patients are in need of stem cell and bone marrow transplants around the world each year. Only 30% of patients are able to find a match for a transplant within their family; 70% of patients rely on unrelated donors. 

With Be The Match as the lead partner the Jada Bascom Foundation and registries around the world will enroll 1 million potential stem cell and bone marrow donors, from Jan 1, 2022 to Dec 31, 2022, using social media platforms, in order to save the lives of patients in need of a stem cell or bone marrow transplants.

We will increase the public’s understanding of the urgent need for informed and diverse potential stem cell and bone marrow donors increasing the survival rate of patients in need of transplants worldwide.

Most folks are familiar with stem cell and bone marrow transplants as treatment for Leukemia and Lymphoma but are not aware that they are also treatments for over 70 different diseases including: 

• Diamond-Blackfan anemia
• Essential thrombocytosis
• Ewing sarcoma
• Fanconi anemia
• Germ cell ovarian cancer
• Hemophagocytic lymphohistiocytosis (HLH)
• Juvenile myelomonocytic leukemia (JMML)
• Medulloblastoma
• Myelofibrosis
• Neuroblastoma
• Polycythemia vera
• Testicular cancer
• Thalassemia
• sickle cell anemia
• Other rare diseases (bethematch.org)

Patients need donors who are a genetic match. When you swab your cheek they do tissue typing to identify your HLA markers. HLA stands for human leukocyte antigens. HLA are proteins—or markers—on most cells in your body. Your immune system uses HLA to see which cells belong in your body and which do not. If 2 people share the same HLA type, they are considered a 'match'. It's much more complicated than blood typing and can be very hard to find a perfect match. When they were searching for a match for my granddaughter they searched 11 million potential donors and found 1 perfect match.  Imagine that 1 out of 11 million. It can be harder still to find a match because some HLA types are less common than my granddaughter, Jada's. (bethematch.org)

Even with a registry of millions, many patients cannot find a match. To help more patients find a donor, we need to increase the ethnic diversity of the registry addressing the need for enrolling donors with the rarer HLA markers. Worldwide, over 50,000 patients per year are looking for a matched donor outside their family. Nearly 50% of the patients that find a donor find his or her perfectly matched donor in another country. (bethematch.org)

The JBF project to enroll one million potential donors in one year will support registries around the world by educating the general public about what it means to be a stem cell donor, the urgent need for a diverse set of donors and how to join their national marrow donor program increasing the survival rate of patients in need of transplants worldwide.  

Utilizing existing social media platforms registries around the world will work together to enroll one million potential donors worldwide in one year.  

Phase One: staff development, study social media use trends in different countries and ethnic communities, social media and marketing plan

Phase Two: Invite 53 existing global network of registries around the world to join in enrolling 1 million donors in one year, invite registries that are not part of the existing global network to participate,  orientate registries to the project, train IT employees to manage the project in their countries, coordinate marketing plan with registries.

Phase Three: Begin social media enrollment worldwide. Utilize existing social media platforms to market the urgent need for potential donors, what it means to be a stem cell and bone marrow donor, highlight the great need for diversity in registered potential donors, how to join your national marrow donor program. 

As I said before stem cell and bone marrow transplants can be the treatment for over 70 different diseases. These diseases effect the old and the young, all ethnicities, class divisions...they cross all categorization societies can think of to divide its populations. 

There is a great need to increase the diversity of registries around the world to serve all populations, as shown here on the "Likelihood of finding a Matched Unrelated Donor Chart" from the United States national marrow donor programs registry Be The Match. 

Each community of underrepresented populations presents its own challenges. For example within the Hmong community in America, there is a reluctance to joining the registry that surrounds beliefs that you should not share or receive body parts, ie blood. Folks within the Latinx community can be reluctant out of fear of being exposed if they do not have legal status. 

Our project plan allows for specific targeted marketing to address the needs and concerns of underrepresented communities.  The Jada Bascom Foundation has had success by inviting members of underrepresented communities to participate in our live drives and online enrollment campaigns. Just last year working with the Quechan Tribal Council in Arizona they changed their tribal policy from 'we do not support the giving of marrow cells by tribal members' to 'it is the decision of the individual tribal member to decide if they would like to become a potential stem cell donor.'

Our plan for enrolling one million donors in one year will help registries around the world to be more inclusive of underrepresented populations and will have a lasting effect on enrollment of potential donors for many years to come.   

Address the unjust and disproportionate burden of rare diseases faced by disinvested communities and historically underrepresented identity groups: The Jada Bascom Foundation may not look like we meet your criteria because our work is not directed at one specific rare disease but many.

As stated earlier there is a list of over 70 different diseases that are treated with stem cell and bone marrow transplants. Some of these rare diseases are genetic disorders. Treatment and management strategies for genetic disorders are designed to improve particular signs and symptoms associated with the disorder. These approaches vary by disorder and are specific to an individual's health needs.Conditions that are characterized by defective blood cell formation, such as sickle cell disease, can sometimes be treated with a bone marrow transplant. Bone marrow transplantation can allow the formation of normal blood cells and enzymes, if done early in life, this may help prevent episodes of pain and other future complications. (https://medlineplus.gov/geneti...)

The enrollment of a diverse set of bone marrow and stem cell donors can effect survival rates and management of many rare diseases.

examples: 

* Fucosidosis an alpha-L-fucosidase deficiency 

* Hurler syndrome

* SCID - Severe combined immunodeficiency 

*etc 

Bone marrow transplantation began in the 1950's and 1960's.  The development of the Be The match Registry and other registries around the world began in the 1980's with the purpose of finding unrelated donors for those in need of a bone marrow transplant. Be the Match is part of a global network of registries from 53 different countries. 

But there are still many patients who are not able to find their perfect match.  One of the reasons for this is lack of diversity. (see who does your solution serve) The Jada Bascom Foundation teaming up with registries around the world will increase the efficiency, productivity and expand the existing network and promote registries within their own countries. This project looks to the future of the education and enrollment of potential stem cell and bone marrow donors in a post global pandemic world. 

The Jada Bascom Foundation enrollment project using existing social media platforms will broaden the reach and scope of registries around the world in the post-pandemic world expanding their use of rising platforms and revitalizing the use of the most popular platforms.  Since its inception in 1996, social media has managed to infiltrate half of the 7.7 billion people in the world. Social network platforms almost tripled their total user base in the last decade, from 970 million in 2010 to the number passing 3.81 billion users in 2020. In 2020, Facebook is the leading social network with people with 2.70 billion of the 3.96 billion social media users worldwide. YouTube and WhatsApp follow this with 2 billion, then Messenger, WeChat, and Instagram, all having 1 billion or more users. By 2021, newcomer TikTok will have joined the 1 billion user club. (https://backlinko.com/social-m...)

You can look back to the ALS Ice Water Challenge to see the untapped power of social media platforms.  Our solution will put the power of interconnectedness to work to save lives. For the past 40 years the registries around the world have focused on "live" drives to enroll donors. In the beginning drawing blood for the DNA sample; then moving to swabbing cheeks. Now registries are to set up to mail cheek swab kits to potential donors. The problem our solution addresses is how to reach large diverse portions of the populations in countries around the world inspiring folks to join their national marrow donor program.  

Our solution focuses on existing social media platforms as a key component. People use social media to express themselves, discuss their interests, connect with friends, grow their careers and as a tool for social change. Different social media platforms are used for specific purposes. For example, expressing creativity is most common on TikTok or Instagram; promoting one's career is common on LinkedIn.

Our solution will reach a diverse population of people by creatively utilizing different platforms to get our message out about folks joining their countries national marrow donor program. At the same time as we are enrolling potential bone marrow donors to save the lives of patients in need of a bone marrow or stem cell transplant we will also be expanding and improving the use of social media platforms by registries all around the world having a lasting impact on marrow donor enrollment.

As you know social media platforms are widely used across the world.

For social networking both for individuals and professionally.  Companies commonly use LinkedIn. They may have a Twitter account and/or Facebook account where they can display their products in both text and visuals, including videos. 

Photo sharing sites like Instagram and Pinterest are used to share photos and short videos like Facebook, Twitter and LinkedIn users can interact with others through tags, likes, comments, or direct message. " 93% of influencer campaigns took place on Instagram in 2018." (https://blog.hubspot.com/marke...) 

For Video Sharing Youtube and Vimeo are the leading platforms. 

The interactive media platforms Snapchat and TikTok are bringing new opportunities to social media users.

clubhouse offers an opportunity to bring up to 5,000 people together to listen to speakers and engage interactively with each other. 

Our solution will use each of these platforms and others to reach the multitude of varied users around the world in our effort to save lives. 

I don't know if I would use the word risk but certainly sensitivity to cultural and social difference is paramount in our solution.  Our world is interconnected though we may not recognize it in our day to day lives. Those who have been chosen, as a donor, to save the life of a patient in their own country or in another country manifest this interconnectedness. Our family learned deeply this interconnectedness when my granddaughter's life was saved by a young man from Neuhausen ob Eck, Germany. And this interconnectedness must be nurtured taking cultural and social difference in hand if it is to flourish. 

Privacy is protected by all of the marrow donor programs enrolling donors across the world.  

How many we currently serve: The Institute for Justice website (https://ij.org/bonemarrowstati...) lists the following statistics for those looking for a match for a marrow transplant in the United States. 

• At any given time, about 7,500 Americans are actively searching the national registry for an unrelated donor.
• 65 for Caucasians; 47 percent for Hispanics; 44 percent for Asians; 34 percent for African-Americans.
• At least 3,000 people die each year because they cannot find a matching donor.

Health Resources and Services Administration (https://bloodstemcell.hrsa.gov...) cites: "Each year, approximately 18,000 people, ages 0-74, in the United States are diagnosed with life-threatening illnesses where a bone marrow transplant  or umbilical cord blood transplant (also called a BMT) from a related or unrelated matched donor is their best treatment option."

DKMS (https://www.dkms.org/get-invol...) "Every 27 seconds, someone somewhere in the world is diagnosed with blood cancer.

The number you will be serving in one year, in five years: I can not tell you the number of patients who will need marrow transplants in one year or in five years but I can tell you the number only goes up each year. Increasing population, environmental factors, medical advancements in diseases treated by marrow transplants, global growth of the availability of stem cell transplant technology all play a role in the increase of patients in need of a stem cell or bone marrow transplants.

The Jada Bascom Foundation's impact goals are to:

improve the use of social media in donor enrollment globally,  

strengthen the global network of registries working to enroll donors,

increase the diversity of potential donors on registries around the world,

expand the knowledge of the facts about bone marrow donation in communities around the world.

The Be The Match registry records anonymously statistical data related to donors and their enrollment, donor transplant, patients and patient recovery, etc. The information most significant in the work of the Jada Bascom Foundation is 

the number of potential donors enrolled, 

in what event or campaign did the potential donor enroll,

the number of potential donors who are identified as a match for a patient in need, 

the number of potential donors that match a patient that then go on to make a donation of their marrow cells or stem cells. 

Be The Match freely shares this data with the Jada Bascom Foundation and other organizations that enroll potential donors for Be The Match. The Jada Bascom Foundation uses these statistics in our evaluation process of enrollment events and campaigns. 

Part-time Staff - 1

The team leader is the former operations manager of the Peacemaker Community that connects, inspires, supports and trains Peacemakers throughout the world. She is also the grandmother of a marrow transplant patient who is now in remission. 

Board Members - 5

BTM Recruitment Coordinator - 1

- Our board president has served as board president with the JBF and other nonprofits for over twenty years. We are fortunate to have her leadership and organizational expertise.  Her professional background is in nursing and hospice care. She leads us to bring about change in support of the organization’s mission and advocates for the needs of patients.

- Our board secretary is a young adult. He has a degree in Political Science. He understands the issues and concerns of living in a complex world. He brings a fresh perspective to the board and expertise in IT, networking and social media platforms.

- Our board treasurer is a retired teacher for the Deaf who has strong connections in the community. She has the experience of working for over 30 years with the marginalized community of Deaf students.

- Board member 1 is a retired police officer and past president of Bikers Against Cancer.  He is a cancer survivor himself and has strong experience in building partnerships.

- Board member 2 is a past employee of BTM with a shared passion for our mission. She is knowledgeable about both the recipients and donors that we serve and has many contacts within the registries. In addition she is a Latina with a commitment to increasing the diversity of marrow registries. 

- BTM Recruitment Coordinator is a marrow recipient and long time employee of BTM. He will lead our team as the liaison between BTM and JBF. 

Our very solution embodies the values of diversity, equity and inclusion. Our goal of enrolling 1 million donors from a minimum of 58 countries with diverse populations, cultures, languages, and socio-economic status reflects our commitment to diversity. 

Our goal of finding the perfect match for recipients of different race, ethnicity, gender, sexual orientation, socio-economic status, age, physical abilities, religious beliefs is a manifestation of the uniqueness of each individual and respects individual difference. 

Our solution also connects registries around the world to jointly participate in enrolling potential marrow donors using existing social media platforms. These established registries share the values of community, equity, integrity and mutual respect. 

Our team recognizes the interconnected nature of all beings. You can see this great web of interdependence manifest in every match made between  recipient and donor. However they are separated by miles, gender, nationality, socio-economic status, age...they share very specific HLA proteins that make a perfect match for a marrow transplant.

No, but our team is led by the grandmother of a child in remission after battling Acute Myeloid Leukemia.  It is very rare in children especially babies. 

Our Be The Match Recruitment Coordinator is a bone marrow transplant recipient.

We are applying to seek financial support for our project.

We are applying to open doors in our effort to find IT volunteers who are inspired by our life-saving project.

We are applying to open doors in our effort to fine marketing and development volunteers who are inspired by our life-saving project. 

We are applying to improve our enlarge the scope of name recognition for the Jada Bascom Foundation

We see potential partners in the MIT faculty and student body.

We now see potential partners in Solve members.