Kim Integrated Health Management Initiative (KIHMI) - El Jardin Project

Through KIHMI, the D.K. Kim Foundation (DKKF) is seeking to address the challenges endured by individuals and families suffering from Huntington’s Disease (HD) in Algarrobo, Colombia. Algarrobo is a small municipality in rural Colombia whose economy is largely dependent on agriculture. Many residents are unable to support themselves due to the high prevalence of incurable neurodegenerative diseases, particularly HD.

In 2022, researchers estimated the global prevalence of HD to be 0.48 per 10,000 persons (Medina, et al., 2022). In Colombia, neurodegenerative diseases are nearly 2,000 times more likely to manifest in residents, with a dangerously high prevalence rate of 9.7 diagnosed cases out of 10,000 persons, detrimentally impacting the quality of life for residents (Ahmad, et al., 2023). This rate does not even account for the undiagnosed cases of HD and other neurodegenerative diseases in the region.

Residents report and research confirms the scarcity of resources allocated to the well-being of HD patients. First, medical professionals in the region have struggled to understand HD and have lacked access to proper medications to treat afflicted patients (Jennie Erin Smith, “Sought Out by Science, and Then Forgotten”). Second, scarce employment opportunities often shift the burden of caregiving onto immediate family members, who may also carry the HD gene or be in active stages of HD but not realize it, due to limited widespread knowledge of the disease. The burden of familial caregiving is further strained by negative stigma toward HD patients. This stigma can lead to feelings of shame, guilt and inadequacy among caregivers and patients alike, exacerbating the already challenging circumstances of managing the disease and reducing the quality of life for those affected. Third, rural Colombian communities do not have access to technological resources such as public transportation or the internet, effectively detaching rural Colombia from community supports and opportunities for economic development to support their chronically ill family members. KIHMI addresses these challenges by working within the fabric of these communities to expand opportunities and promote community-driven progress in four major areas: Infrastructure and Housing; Health and Wellbeing; Communication and Education; and Solidarity, Economy and Sustainability, including our El Jardin project.

Operating under the pillar of Solidarity, Economy and Sustainability, El Jardin focuses on meeting local families’ nutritional needs and increasing families’ skills, capabilities and opportunities to generate sustainable income based on the local resources of agriculture. Our efforts began by collaborating with the primary school in Algarrobo to establish a communal garden accessible to all students. Additionally, we planted 200 fruit trees throughout Algarrobo, providing essential shade and a bountiful supply of fresh fruits. This initiative not only provided students with access to fresh produce but also served as a learning opportunity. Subsequently, we distributed seedlings from the school garden to students' households, enabling them to collaborate with their parents and other family members to cultivate their own home gardens. We also have involved community elders in sharing and recording their farming techniques and seeds, passed down through generations, so that the entire community can benefit from their wisdom and skill and so this ancestral knowledge is not lost to future generations.

Through personalized visits, ongoing communication via WhatsApp, and the collection and sharing of ancestral seeds and farming practices, we are currently assisting 30 families in establishing vertical nurseries and cultivating crops that are both nutritionally beneficial and proven to mitigate the impact of HD (according to the Huntington’s Disease Society of America). Furthermore, we promote the exchange of produce among families to foster community support and cooperation.

With additional support from MIT Solve, we aim to expand our program to involve more families and collaborate with them to establish local businesses for marketing and selling surplus produce from their home gardens. By cultivating their agricultural skills and capabilities and preserving ancestral knowledge of local farming practices, we are helping to forge greater economic opportunities for local families to thrive. Excess produce can be packaged and sold to local businesses or independently at markets. Additionally, we are fostering a culture of self-sufficiency as families develop their gardening skills, providing both long-term food security and economic prosperity for years to come. 

Our solution is directed towards individuals and families grappling with HD in Algarrobo, Colombia and neighboring rural municipalities with similar prevalence rates of neurodegenerative conditions. Many affected individuals struggle to access specialized medical care and essential medications, while caregivers often face financial strain and social isolation. Through our initiatives, we aim to directly address these issues by providing access to nutritious food through sustainable agriculture, empowering individuals and families to generate sustainable income, fostering social support networks, and enhancing education and awareness about HD within the community.

We particularly hope to dispel uncertainties that stem from financial insecurity. Many families in Algarrobo find the concept of saving difficult to grasp. With this work, we hope to transform families from a mindset of scarcity to that of abundance. Families can use these gardens as generational sources of income and sustenance as their children learn to grow crops alongside their parents. By developing a sense of financial responsibility at a young age, the next generation will become more knowledgeable about financial concepts. More importantly, we can ensure all families meet their nutritional needs by growing crops that can feed their households for low costs compared to the traditional market. We also propose creating a co-operative with a social brand to strengthen El Jardin’s presence in the community and establish business partnerships with local establishments like hotels or restaurants.   

Our El Jardin project also diminishes local families’ unhealthy reliance on corporate farming. Historically, large-scale corporate farming has often led to devastating acts of widespread deforestation. To combat this, Colombia has made great strides toward reducing large-scale deforestation in the region, dropping by 29% in 2022. By encouraging and supporting local farming and cooperative food distribution, we boost this rural community’s self-sustainability and economic independence – all through an approach that can be customized and replicated within other communities, especially those with a high prevalence of neurodegenerative disorders.

After many years of investing in education in the U.S. and abroad, the DKKF expanded our work by taking a proactive role in helping local and international students, as well as other current and emerging leaders, to manifest their education, insights, creativity and relationships to achieve sustainable social good in their communities. This led the DKKF to develop a “Do No Harm” framework, methodology and curriculum for sustainable social development. Our Do No Harm methodology ensures that the identification of both community problems and solutions are generated from within the community and that solutions are implemented by community members themselves. Solution-oriented programs are designed for long-term sustainability.

Driven by our Do No Harm methodology, our team is well-positioned to deliver this solution under the strong guidance of Colombian-native Olga Lucia Parga Nates, the DKKF’s Director of Social Implementation. Olga Lucia has served as KIHMI’s leader and project coordinator since KIHMI’s inception in 2017, coordinating over 10 projects by working hand-in-hand with Colombian families to identify the most pressing issues facing their community, develop locally driven and inspired solutions to address major issues, weave solutions plus infrastructure to support such solutions into the fabric of Colombian communities, and evaluate long-term impact. Community voice and choice are central to our approach and pivotal to Olga Lucia’s leadership of KIHMI.

Throughout her seven-year tenure as KIHMI's leader and project coordinator, Olga Lucia has demonstrated strong alignment with the Do No Harm framework by incorporating a bottom-up approach to all project development. This strategy, rooted in a deep understanding of Colombian rich culture and history, is instrumental to the success of our projects. Inclusive project development is further supplemented by invaluable insights provided by the KIHMI El Jardin team who are native to the Algarrobo region. Our team’s fundamental connection to the region has also positioned us as a well-trusted institution within the community. Not only does this status lend to our project’s positive reception and sustainability, but also enables our team to learn from and leverage traditional skills already prevalent in the community, thereby ensuring our projects align closely with the lived experiences of community members.

For example, Olga Lucia has successfully integrated 30 families into the El Jardin program,75% of whom are directly impacted by HD. The remaining 25% are also impacted by neurodegenerative diseases, whether as close family members or through other related conditions. The El Jardin project was created with direct input from Algarrobo residents who were experiencing rampant food insecurity and showed a willingness to learn how to curate their own small-scale gardens. Through frequent travel to Colombia and constant communication through WhatsApp, Olga Lucia organizes a four-person team in Colombia who provide families with individualized instruction and mentoring that guides them through vertical nursery gardening and helps them produce staple crops that are indigenous to the region. United by a common passion for working with the community, the El Jardin team members are locals themselves and two are personally impacted by rare diseases.

The Solution Team believes our project is in the growth stage. Overall, 10 KIHMI-led programs have been established in various Colombian communities over several years, beginning in 2017. El Jardin has been implemented since 2019.

During the pilot stage, we planted 200 fruit-bearing trees throughout the town. Local families were encouraged to “adopt” a tree, which helped them take a leading role in agricultural care and maintenance. The townsfolk were elated to benefit from fresh fruit and shelter from the sun, fostering a newfound sense of agricultural and environmental interest.

After receiving positive reception from families, we worked quickly to establish a school garden at Rafael Nunez School, encouraging school-aged children to take seedlings home to grow their own home gardens in 2020. This project aimed to provide a hands-on educational experience for school-aged children while simultaneously promoting food security and self-sufficiency, especially during the initial onset of the COVID-19 pandemic.

In 2022, El Jardin's activities shifted in response to community need. Specifically, families sought in-depth knowledge on how to properly take care of their new seedlings. Currently, we are providing one-on-one agricultural training to 30 families annually. Families are taught how to create vertical nurseries and grow produce that is commonly consumed and/or integrated into their daily diet. These families are encouraged to practice mutual aid through the routine exchange of produce among other families.

We believe Solve can provide crucial support in overcoming various barriers as we work to address the challenges faced by individuals and families affected by HD in Algarrobo, Colombia. These barriers include financial constraints, limited technical expertise, legal complexities, cultural challenges and market barriers.

With Solve's assistance, we aim to secure funding to scale our initiatives, connect with technical experts to enhance project effectiveness, navigate legal intricacies as each family begins to sell excess produce and identify market opportunities for locally produced artisan goods such as jams, jellies, teas and local sweets, all of which are made from staple and indigenous homegrown crops.

This support is particularly critical as prior funding for the KIHMI’s projects is set to sunset by the end of this fiscal year. We are committed to ensuring that ongoing projects, including El Jardin, are not disrupted, which is why we are pursuing numerous avenues of partnership to sustain KIHMI’s projects after current funding ends. By leveraging Solve's network and resources, we can overcome these challenges and advance El Jardin and our other solutions in a sustainable and impactful manner, ultimately improving the lives of those affected by HD in Algarrobo and fostering community resilience and empowerment.

First and foremost, KIHMI’s El Jardin solution is innovative because it is community-driven. Families dealing with HD shared the issues they are struggling with the most and helped to design a solution that is community-centered, community-driven and sustainable. The solution builds upon resources already existing in their community, from discarded plastics and tubing to ancestral seeds and farming practices. The solution does not rely on outsiders; in fact, it is designed to empower local families to grow, consume, exchange and sell crops based on what is already around them – native crops, recyclable plastic containers, refuse for composting, rain water and elders’ knowledge.

The solution is centered around and generated by the most marginalized families in Algarrobo – those dealing with HD – and promotes a sense of community among them. Normally stigma and shame are pervasive among those impacted by HD, though it is tied to the genetic lineage of one of the main families in the community. This solution brings them together instead in the spirit of collaboration, growth, abundance, hope and prosperity, instead of further isolating them.   

The solution incorporates technology in a way that is feasible and sustainable in the rural town of Algarrobo, where poverty is pervasive and internet and electricity are unreliable. We identified WhatsApp as the optimal tool to foster communication with the El Jardin team and between participating families. WhatsApp is a commonly used messaging application that is free for families to use. The app is available on all types of cell phones and its use typically doesn’t count toward data use on cell phone or internet plans. In addition to using WhatsApp to send encouraging messages and tips to participating families and welcome their questions and exchanges with us and with one another, we use WhatsApp to save videos of elders sharing the farming techniques they and their ancestors have honed. We are building up a library of ancestral agricultural knowledge that otherwise would have been lost once these elders passed away.

The next step of the solution is still to be developed: processing and packaging of excess crops. While we will work with the families to collectively gather and sell excess crops to local markets and restaurants, we also are exploring the possibility of making jams, jellies, teas and other canned or dried goods that can be sold locally, nationally and internationally. As we work with the community to further explore these opportunities, we want to continue to tap into local resources and knowledge and ensure that our expanding solution continues to be highly sustainable.

Our solution is designed to improve nutrition, health, interconnectedness and economic opportunities of Algarrobo residents who are impacted by HD or other neurodegenerative diseases. Our activities will include one-on-one coaching to help families develop vertical nurseries; trainings (in person and via WhatsApp) on developing and maintaining nurseries, including conversion of used plastics, micro-irrigation, composting and rain water capture; education on optimal crops to mitigate impact of HD; recording of ancestral farming techniques; sharing of native ancestral seeds; peer mentoring; distribution and sales of excess crops as a cooperative venture; and processing, marketing and sales of excess crops as artisanal canned or dried goods as a cooperative venture.

Through these activities, we will be able to measure the following outputs:

·      Number of families engaged in each learning cohort

·      Number of home gardens created

·      Number of individual and group trainings

·      Number of families and family members participating in trainings

·      Number of videos recorded containing ancestral knowledge

·      Number of different crops grown, including number harvested from native ancestral seeds

·      Number of families in earlier cohorts who become mentors to families in newer cohorts

·      Number of peer mentoring sessions

·      Number of families involved in cooperative venture for sale of excess crops

·      Amount and value of excess crops sold to local community

·      Amount of excess crops processed into artisanal dried or canned goods for sale

·      Volume of and revenue from sales of artisanal dried or canned goods  

Our El Jardin project will achieve the following outcomes among participating families:

1.     Knowledge & Skills: Increase families’ knowledge and skills regarding regional crops that can mitigate impacts of HD, setting up and maintaining a vertical nursery, harvesting crops and other farming techniques.

2.     Community Engagement: Decrease isolation and increase positive interactions between families; and increase in activities involving multiple generations working together.

3.     Health & Nutrition: Improved access to and consumption of healthy foods, especially regional crops recommended by HD Society of America (https://hdsa.org/find-help/living-well-with-hd/nutrition/); decreased hunger; decreased symptoms or impacts from HD; and improved overall health.

4.     Economic Empowerment: Increased income; and improved access to economic opportunities.

5.     Sustainability: Increased recycling of plastic jugs and tubes; preservation of local nurseries; and increase in locally produced crops.

Every element of this project was created with an inclusive framework in mind, ensuring that individuals with and without disabilities can contribute to, construct and maintain the in-home nurseries. This is supported by research indicating that 87% of adults with disabilities derive significant physical and emotional health benefits from having access to a garden (Thompson, “Gardening for Health: A Regular Dose of Gardening,” Jun 2018). Similarly, a study conducted in Scandinavia has shown positive neurological benefits from home gardening, which was particularly beneficial to participants with clinically diagnosed neurodegenerative diseases (Spring, “Design of Evidence-Based Gardens and Garden Therapy for Neurodisability in Scandinavia: Data from 14 Sites,” Apr 2016). We expect this solution to have a meaningful impact on HD-afflicted families for generations to come.

The El Jardin solution is seeking to leave a lasting positive impact on the well-being of families affected by HD and similar neurodegenerative diseases in Algarrobo, Colombia. Below is a list of our impact goals with specific indicators:

1.     Knowledge & Skills: 100% of participating families will report increased knowledge and skills regarding food, nurseries and farming, especially about regional crops that can mitigate impacts of HD, how to set up and maintain a vertical nursery using recycled materials, and when and how to harvest crops.

2.     Community Engagement: Each year, we will build a new cohort of participating families, aiming to expand by 15-30 families per year. 100% of participating families will be impacted by HD or other neurodegenerative disorders. 80% of participating families will report decreased isolation after at least 1 year of participating in El Jardin. 50% will report increases in their positive interactions with other local families since becoming involved in El Jardin.

3.     Health & Nutrition: 80% of participating families will report improved access to healthy food and decreased hunger after at least 1 year of participating in El Jardin.

4.     Economic Empowerment: At least 25% of participating families will contribute excess produce from their home nurseries to collectively sell (either a fresh produce or processed artisanal goods). Of those participating in this cooperative venture, 80% will report increased income within 1 year.

5.     Sustainability: 75% of participating families will preserve their home nurseries for at least 1 year.

El Jardin is powered by both modern technology and indigenous ancestral technology related to agricultural development. Pairing modern communication technology with ancestral agricultural practices reflects our commitment to innovation rooted in local context and community needs.

First, WhatsApp, the modern messaging platform that allows individuals to communicate with one another remotely, is the main method of communication between participants and El Jardin team members. WhatsApp also serves as the primary training platform to teach, guide and coach families through development and maintenance of their home nurseries. There is a lack of accessible transportation in rural regions of Colombia, making it difficult for families to engage in in-person trainings, especially without financial support to do so. As 100% of our participants are impacted by HD or similar neurodegenerative diseases, we wanted to ensure that our skills and knowledge workshops remained accessible to family members who are immunocompromised, limited in mobility and/or house-bound, as well as their caregivers. WhatsApp allows us to offer trainings virtually and also gives families a platform to connect to El Jardin team members and one another with any questions between training sessions.

Second, the vertical nursery and agricultural component of this project is informed by indigenous agricultural knowledge, which we are working to preserve. These traditional techniques, including native soil cultivation and composting practices, are now being shared by community elders (and recorded for future generations) to guide families on how to utilize, nourish and protect the limited land and resources around them. Moreover, families are encouraged to grow staple crops in the region (including through the sharing of ancestral seeds), which minimizes the risk of invasive species negatively impacting the environment, while also paying homage to ancestral agricultural practices that have defined the region for decades.

The El Jardin Solution team is led by Olga Lucia Parga Nartes, who works full-time and resides in Arizona. Olga Lucia communicates regularly with the rest of the El Jardin team and community members through WhatsApp and frequently visits Algarrobo. The remaining four team members are part-time and are based in Colombia, with one dedicated team member who resides in Algarrobo. Three of them have been involved with El Jardin since it began in 2019. The fourth joined the project last year.

KIHMI began in 2017 as a collaboration between USC School of Pharmacy and the DKKF. The El Jardin solution first was developed and launched in Algarrobo in 2019. Since then, the solution has continued to evolve with continual leadership and input from the community. Individual work with families to establish vertical nurseries within their homes started in 2022.

The KIHMI El Jardin team is dedicated to minimizing barriers to opportunity for staff and providing a welcoming and inclusive environment for all team members. As mentioned previously, KIHMI was developed around the pursuit of our “Do No Harm” methodology, which extends to all aspects of project implementation. We prioritize creating a workplace that reflects the diversity of the communities we serve. Currently, all KIHMI staff are Colombian natives, which is an extension of our belief that residents stand at the forefront of cultivating generational knowledge and sustainable solutions for their community.

Furthermore, we recognize systemic barriers that disproportionately affect marginalized groups, and we are committed to dismantling these barriers within our organization. This commitment is a testament to the social injustices endured by our organization’s founder, Dong Koo Kim, during his childhood. As a child, he fled his home in Seoul due to a military invasion spurred by the Korean conflict. As he and his family sought refuge, Mr. Kim was grateful to attend temporary schools created by teachers dedicated to providing quality education despite tragedy. Many years later, Mr. Kim created the DKKF to honor the legacy of educators who helped propel him into a successful career and fulfilling life. As such, as an organization, we prioritize the individual growth of all of our team members with profound acknowledgement of how their lived experiences positively contribute to the team’s success.

El Jardin’s business model is centered around creating sustainable home-based farming that meets the nutritional, economic and social needs of families in Algarrobo who are impacted by HD. The goal is not to sustain the work of paid El Jardin’s team members in perpetuity. Rather the goal is to build a structure of trainings and peer mentorship that can ultimately support every family impacted by HD in developing home nurseries, growing beneficial crops, and collectively selling excess crops either as fresh produce or artisanal canned or dried goods.

We already have had many benefits emerge from our first cohort of 30 families, who successfully established their home nurseries, met their families’ nutritional needs and started exchanging produce amongst themselves. The next phase will enable us to expand to a second cohort, engage the first cohort as peer mentors, and develop a cooperative venture to sell excess produce. We have confidence that there is an appetite for native, home-grown produce and artisanal goods because of the deficit of options currently in the market. Currently, local stores and restaurants have to rely on companies doing large-scale farming to provide consistent produce. However their farming practices are destructive to native land and lack the flavor and complexity of native crops. Our cooperative venture can provide local markets and restaurants with a viable, affordable and community-centered alternative. Additionally, we believe that there will be an international market for jam, jellies, teas and other artisanal goods prepared by families in Algarrobo who are impacted by HD. This also will help to expand international awareness of HD and of its prevalence in certain regions of the world, like Colombia.

Once these structures for marketing, distribution and sales as a cooperative venture are in place, and the myriad of trainings by our El Jardin team and elders passing along ancestral knowledge, are captured on WhatsApp, this project will be poised to continue on without us – for generations to come.

In the past, all of KIHMI’s projects were funded by the DKKF, as part of a partnership with USC School of Pharmacy to forge sustainable villages in area of Colombia impacted by HD. Over the past seven years, a myriad of projects has been developed – including El Jardin – with great success. Unfortunately the initial investments are coming to an end. USC School of Pharmacy’s involvement with KIHMI ended in 2023 and the main benefactor to the DKKF will stop funding KIHMI on 12/31/24. Starting next year, KIHMI needs to blossom on its own as an independent initiative. The plan is for KIHMI to ultimately become its own nonprofit organization, with a sister nonprofit based in Colombia.

El Jardin is one of KIHMI’s key projects and one that both KIHMI and DKKF leaders are committed to seeing continue until it can be fully sustained by the community itself. We anticipate that we are 3-4 years away from El Jardin becoming fully self-sustaining. We want to support several more cohorts of families in coming into the project and developing home nurseries, structure and encourage the peer mentorship model with those families who were in the first cohort(s) to serve as mentors for newer families, and solidify the cooperative venture approach to marketing, distributing and selling excess crops (whether fresh or processed into canned and dried artisanal goods). Once this has been achieved, we can shift our attention to other impoverished communities who are impacted by neurodegenerative diseases to create similar community-centered, ancestry-rich, self-sustaining agricultural projects.