Kim Integrated Health Management Initiative (KIHMI)

D.K. Kim Foundation

According to the Colombian National Administrative Department of Statistics (DANE), there is an estimated 35,000 inhabitants within the rural communities of Juan de Acosta, Atlántico, and Algarrobo, Magdalena Colombia. Our field team has found that over 5% of these residents are socially directly affected by Huntington's Disease, whether symptomatic or at-risk (KIHMI). Even worse, as of 2024, an estimated 44.6% of Colombians in rural areas live in absolute poverty, attempting to survive on less than $2.15 USD a day (Garcia 2024; Children Change Colombia).  

The most profound impact of the disease is stigma derived from misinformation and social imaginary. Patients, caregivers, and their families are harassed and socially excluded from their communities, leading to feelings of shame, guilt and inadequacy exacerbating the already challenging circumstances of managing the disease. Another negative impact contributing to the severity of this issue is the isolation inherent in rural living. The geographical remoteness of these areas restricts access to essential services and support systems, furthering the sense of social isolation experienced by patients and their families. Additionally, the small population size in these communities has led to a higher incidence of endogamy, which increases the prevalence of genetic diseases like Huntington's. Further complicating the situation is the fact that these regions are classified as red zones due to ongoing armed conflict and violence, which further isolates these communities. As of the 2023 Human Rights Watch: Colombia Report, armed groups still dominate and patrol these rural regions, abusing, killing and exploiting innocent civilians residing in these areas.

Moreover, as HD symptoms worsen, patients often lose their jobs, placing financial strain on households. Family members then assume caregiver roles, leading to further income loss. This economic pressure may force minors into becoming financial providers, resulting in child labor and school withdrawal. Children may even become caregivers when their HD-affected loved one begins requiring 24-hour care. Access to education is crucial for community development. However, in these areas, social exclusion stemming from the disease impedes students' sense of security and future prospects. The school environment can amplify disease stigma, prompting students to drop out to avoid the pain of neglect and harassment.

Physicians and healthcare providers in these communities often lack the necessary training to diagnose and treat rare diseases, resulting in misdiagnoses and increased isolation for HD patients. This issue is compounded by the requirement for accurate diagnosis to register patients in the Rare Disease Database for access to government-funded healthcare benefits. Historically, rural communities have expressed intense feelings of neglect by researchers and the healthcare system. For generations, these communities have participated in research, uncertain whether any cures were being developed. Privacy regulations surrounding clinical trials have prevented local and regional hospitals from obtaining crucial research insights, leaving them ill-prepared to address HD effectively. Consequently, many patients feel like experimental subjects, analogous to "guinea pigs,” valued solely for their disease.  

Our social solutions model, based on the adaptation of the Do No Harm (DNH) framework, mitigates the negative social impact of rare diseases on daily life of patients, caregivers, and families beyond diagnosis. As an external organization, KIHMI recognizes the potential for disruption and harm generated by our work. However, our social model derived from DNH 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 to drastically minimize the potential for harm. We aim to incorporate a sustainable solution that is led by and intrinsic to the community’s input and way of living. Our 7-step model starts with 1) social diagnosis to identify issues within the community, followed by 2) prioritization using validated instruments. We then 3) design solutions based on these findings and 4) gather community feedback through focus groups and interviews. The solutions are 5) refined based on this input to ensure a bottom-up approach. Next, we 6) implement the solutions, integrating them into the community’s daily life with ongoing adjustments. Finally, we 7) evaluate the long-term adoption and sustainability of the solutions, ensuring they continue without external support.  

Our solutions are housed under four regenerative pillars: Communication and Education, Infrastructure and Housing, Health and Wellbeing, and Solidarity Economy and Sustainability.  These pillars help ensure that we holistically tackle the negative social impact of rare neurodegenerative diseases on the community. For instance, the "El Jardin" project operates under the Infrastructure and Housing pillar. El Jardin launched in Algarrobo in 2019 in the form of an accessible school garden. Since then, the project has evolved with continual leadership and input from the community, leading to our current project phase that teaches a cohort of 30 families to establish vertical nurseries within their homes, thus expanding the project to the Solidarity Economy and Sustainability pillar. Similarly, projects operating under Communication and Education, such as "Vido Estilo K,” and "Visionados" create interactive learning environments for school-aged children in our communities. These programs design educational activities that foster curiosity and problem-solving skills, enhancing student engagement and learning outcomes. We have observed that these initiatives not only improve the quality of life for those affected by HD but also mitigate the isolation felt by their families. 

The approach of KIHMI is innovative and unique as we focus on the negative social impact of rare diseases on the patients, families and the entire community rather than a clinical diagnosis, treatment, or cure. This ensures the community experiences inclusion, connection, and value as they navigate the challenges of their daily lives.  By embracing the community where they are, we are able to share in the daily experiences of the community, allowing us opportunities to educate and prepare patients, caregivers, and families to navigate and understand the extensive timelines associated with finding treatments and a cure for rare neurodegenerative diseases. 

Our solution serves individuals and families grappling with rare diseases, especially neurodegenerative diseases, with a focus on Huntington’s Disease due to a large cluster in the regions where we work. Here, families possess limited knowledge about these rare diseases. As HD progresses, patients commonly experience involuntary movements (chorea), cognitive decline, significant behavioral and psychiatric changes, slurred speech, and dysphagia. Likewise, social challenges progress significantly due to increased difficulties in communication, maintaining relationships, and managing daily activities, which often leads to social isolation and dependence on around-the-clock care. HD patients also struggle to access specialized medical care and essential medications. Current Colombian public policy hinders early-stage preventive care following diagnosis. Moreover, impoverished communities encounter obstacles in obtaining an official diagnosis, which necessitates both genetic confirmation and clinical assessment. The actual number of cases of HD in Colombia is difficult to identify, due to the lack of registration and testing for the patient to confirm the diagnosis in rural communities. KIHMI gathers social data when meeting with families to help identify, connect and support them whether they are symptomatic or at risk.  

KIHMI addresses these challenges by working within the fabric of these communities to expand opportunities and promote community-driven progress in four pillars: Infrastructure and Housing; Health and Wellbeing; Communication and Education; and Solidarity Economy and Sustainability. All KIHMI programs are designed to enhance these domains, fostering an environment where holistic development and improved quality of life are key priorities. Through adaptable targeted interventions, KIHMI aims to build resilient communities that can independently sustain their growth and well-being, beyond the diagnosis. The DNH adaptation for social development aims to disrupt the cycle of poverty, build resilience and opportunities for inclusion for those affected directly and indirectly by rare diseases, promote literacy and life skills in the next generation, and rebuild from the physical and emotional destruction caused by residing in red zones. 

Our community-driven interventions promote holistic well-being by addressing all known dimensions of health and wellness – physical, intellectual, emotional, social, spiritual, vocational, financial, and environmental – integrating educational components that aim to undo the deeply ingrained cultural stigma associated with Huntington’s Disease and other neurodegenerative disorders (Stoewen, 2017). We are especially mindful of establishing and providing critical social support needed for individuals beyond the patient, including caregivers, friends, and families in recognition of the broader impact on the entire lineage irrespective of the primary patient. Community interventions vary in their implementation, with some overlap and similarities across communities, yet each is uniquely tailored to address specific and evolving community needs as voiced by the residents themselves.  

We have selected the ‘Pilot’ stage because we are still working to secure an established set of donors and revenue streams. Currently, we are established in two communities, Algarrobo, Magdalena and Juan de Acosta, Atlantico, but we have identified five communities in the same Caribbean region that have a high prevalence of rare neurodegenerative diseases. We have not been able to work in these additional communities due to a lack of resources. 

Below is an overview of social solutions that KIHMI designed and implemented housed under the four pillars. These social solutions are in various stages of the model. All social solutions that are in the final stage (#7), are in the process of gathering data to analyze the sustainable long-term community adoption. 

Communication and Education 

• Click – Currently, 60 students from Algarrobo, Magdalena and 31 students in Juan De Acosta are participating in a Rotary-funded pilot project where they are designing social projects addressing community needs related to the UN’s Sustainable Development Goals relating to environmental issues. Youth affected directly or indirectly by the disease have no sense of hope or future. This project provides opportunities to think beyond the disease and empowers them to see their value and input in the community. They also collaborate with other like-minded teens to unite in solving problems within their community. In Algarrobo, CLICK is currently in stage 5 of the model, and in stage 6 in Juan de Acosta. 
• Vida Estilo K - The Vida Estilo K project, targeted youth ages 6-12 to develop their life skills based on the World Health Organization (WHO) mental health guidelines, specifically aimed at children with HD. Implemented in Algarrobo and Juan de Acosta, the project involved 50 kids in each community. Parents also became involved through the School of Parents, a support group-like setup where 27 parents in Algarrobo and 30 in Juan de Acosta shared strategies for handling difficult issues, such as familial conflict. A psychologist also led these meetings. This project is currently in the seventh stage of our social solution model in both communities.  
• Vida Estilo K2 - In 2022, Vida Estilo K2 was developed for older kids, ages 12-16, involving 35-36 participants in Algarrobo and 40 in Juan de Acosta. New instructional videos and activities were created for this older age group. Each module engaged youth for six hours per week over six weeks, totaling 216 hours of instruction over a year. Vida Estilo K2 curricula was designed based on an approach of the inquiry based methodology of learning called 5Es: engage, explore, elaborate, explain, and evaluate. The goal of this project is to create awareness among youth about their place in the world and the importance of the relationship between the individual and its context. This project is on stage five on our social solution model in both communities.  
• Visionados - The goal of this project is to enhance the classroom experience for students using the inquiry model of learning. The direct participants are teachers from local schools attended by the children of our beneficiaries. These children, who are at risk of early stages of the disease, experience increasing stress in the school environment, leading to poor performance, a high dropout rate, and a lack of interest in learning. This project aims to indirectly benefit the entire local school system population. It is the result of an alliance with the TGR Foundation and has been implemented exclusively in Algarrobo, currently in stage 7 of our model.  
• Visionados Leaders -This project is an initial effort to educate community leaders and HD family members on designing solutions for their own social initiatives, using our adaptation of the DNH framework. By doing so, they can become proactive agents of change within their communities, moving beyond mere "good intentions" and effectively preventing social conflicts. Through this initiative, stigma is reduced as leaders collaborate and work together on solutions that benefit the entire community, focusing on the value of individuals rather than their disease. Currently, this project has been implemented solely in Algarrobo and is in stage 6 of our social model.  
• La Ruta H - La Ruta H is in stage 5 of the model in both communities. The goal of La Ruta H is to empower the community, to express in their own language, their experience with rare diseases using the technology at hand. This creative outreach project enabled KIHMI to work towards minimizing taboo about talking about rare diseases; increase the community’s knowledge of HD and other rare neurodegenerative diseases; decrease social stigma among HD-affected community members; and increase empathy for HD-affected community members.  

Infrastructure and Housing 

• El Jardin – El Jardin is in Algarrobo and is currently in stage 7 of the model. This project focuses on meeting local families’ (who are impacted by rare diseases) 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, where multiple students come from HD-affected families, to establish a communal garden accessible to all students. El Jardin has created a space where all students are valued and included. Additionally, in 2019, we organized an "adopt a tree" campaign to begin working with the community on the concepts of ownership and care where the community and local leaders planted. As a result, we planted 200 fruit trees throughout Algarrobo, providing essential shade and a bountiful supply of fresh fruits. This project not only provided students with access to fresh produce but also served as a learning opportunity. 

Health and Well-Being 

• Activate – Activate is a comprehensive program based on the Parkinson Wellness Recovery (PWR) methodology, that teaches patients and their caregivers functional exercises designed to maintain the functionality and sense of independence for as long as possible. This program is tailored to improve mobility, balance, and overall physical well-being. By incorporating exercises that are both accessible and effective, Activate empowers participants with skills that can enhance the quality of life for those affected by HD and similar conditions. Another benefit of this program is that other community members not directly impacted by a rare disease have requested to participate in the workshops. This project is on stage 7 of the model in both of our communities. 
• Estar Bien - Estar Bien educates local and regional healthcare workers, medical facilities, and public offices about the symptoms and progression of rare diseases present in the communities where we serve (currently, our focus is Huntington’s Disease). This is important to eliminate the misinformation that results in exclusion, misdiagnosis, and harmful interventions. We work as a bridge between the health system and the community to improve communications between the various public offices and the patients. We develop projects that gather social data to help improve local public policies, register patients in the National Database for Rare Diseases and assist them in obtaining a Certificate of Disability. Each step allows patients to receive health benefits and treatment covered under the national health care system. Estar Bien is in stage 6 of the model in Algarrobo, and stage 5 of the model in Juan de Acosta.  
• Mirados de Amor (How You Look at Love) - The KIHMI team produced a radio soap opera miniseries that recounts a love story between a man and his late lover, who succumbed to HD. Reaching over approximately 50% of the population in Algarrobo and Juan de Acosta via local community radio stations,  this educational and creative project aimed to broaden the awareness and prevalence of HD within the community; advance access to and understanding of genetic counseling; and reduce social stigma surrounding HD. This project is located in Algarrobo and is currently in stage 5 of the model.  

Solidarity, Economy and Sustainability  

• El Jardin - Beyond the walls of the school, we opened a branch of El Jardin under the Solidarity Economy and Sustainability pillar to focus on the specific financial and nutritional needs of our HD families.  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. The El Jardin cohort is currently growing aji topito, cilantro, cucumbers, broadleaf plantain, tomatoes, squash, onions, garlic, basil, green beans, and peppers. This project is in stage 6 of our social model.  
• Telas Que Cuidan - Telas Que Cuidan is on stage 6 of the model in Juan de Acosta. This project establishes a community cohort of women caregivers to develop innovative and sustainable apparel and fashion entrepreneurs. This space provides opportunities for the caregivers to experience a creative outlet separate from their role as a caregiver. They can gather with like-minded women to learn pattern making, textile and fabric manipulation, and measurement techniques to solve fashion dilemmas associated with patients affected by disabilities from rare diseases. We have a cohort of 17 women in Juan De Acosta. In addition to being trained in traditional techniques, the participants are taught business and entrepreneurial skills through our partnership with Universidad de Libre’s Center of Entrepreneurship and Innovation to strengthen their personal finance skills, create business plans, and ultimately become entrepreneurs. In 2022, we launched a collaborative fashion showcase featuring models with Huntington’s Disease sporting the women's handmade clothing designs. Our showcase was able to bring much-needed awareness to the disease and helped reduce the social stigma surrounding it.

KIHMI’s mission is to mitigate the negative impact of rare diseases on the patient, caregivers, families, and community is accomplished through our unique social model. The model is not a band aid intervention but rather an adaptation of the Do No Harm framework to social development.  Our model propels the community towards independence and self-sustainability. We strive to minimize our team’s disruption as an external agency to the local community. DNH adopts a bottom-up approach to social development work, utilizing active-participatory methods to guide the design and development of community-driven interventions. In this sense, our interventions are directly shaped and informed by community members, leading to a trusted partnership between us.  

KIHMI also offers opportunities for successful scalability and replicability. Initially focused on Huntington's disease (HD), our model is adaptable to other rare neurodegenerative diseases and diverse community contexts, both rural and urban. This scalability is facilitated by a replicable curriculum that captures lessons learned and best practices from our pilot projects. For instance, we have integrated WhatsApp as the optimal communication tool for rural Colombia, where poverty is widespread, and internet and electricity are unreliable. WhatsApp, being free and accessible on all types of cell phones, facilitates communication without adding data costs. 

Another fundamental component of our innovation is the "learn and confirm" paradigm, coined by Lewis Sheiner (1997) for his work in drug development. His paradigm helps us to divide project design into two distinct phases: 1) learning and 2) confirmation. The KIHMI team first learns from initial community interactions and feedback to co-develop tailored interventions, and then confirms the effectiveness of these interventions through systematic evaluation and iterative refinement (Step #7). With this paradigm, we have learned that our interventions must extend beyond a confirmed medical diagnosis since a medical diagnosis is not necessarily helpful in their daily lives. Rather, our interventions have been built around the expressed needs of residents who require daily living support to strengthen their quality of life and build community resilience. By nurturing this resilience, KIHMI is positioned to catalyze positive impacts that extend beyond healthcare outcomes, influencing broader social and economic contexts outside of rural Colombia.  

Our proposed solution has the potential to transform the market and landscape by fostering collaborations with government entities, the pharmaceutical industry, industries with social initiatives, academic research institutions, and other non-profits. Collaborating with the government helps inform and shape public policy to better reflect the community's realities. Partnering with academic research institutions provides opportunities for developing hypotheses, conducting innovative research, forming additional alliances, and driving advancements. Collaborating with the pharmaceutical industry aids in identifying and retaining patients for clinical trials. Industry partners with social development initiatives can leverage the KIHMI model to develop and implement sustainable programs that enhance community well-being. As a result, we are building resilient communities that increasingly recognize the importance of participating in clinical trials and research. However, a high level of functional illiteracy within our communities presents challenges in understanding data management, research timelines, and aligning expectations with reality.  

Our model for social development, designed to enhance the quality of life for patients, their caregivers and their community, faces several challenges such as financial constraints, limited educational opportunities for residents, and insufficient access to medical care. These barriers impede KIHMI’s ability to deeply engage the community in designing community-driven interventions, especially as we aim to increase socioeconomic inclusion for those with rare diseases; increase community engagement; and conduct community stabilization activities.  

The Amgen Prize would enable KIHMI to pursue our activities unobstructed by these limitations and continue to allow the team to focus on aspects of the disease not typically considered. For instance, the Prize would facilitate collaborations with prestigious research universities and medical centers in Colombia, amplifying our advocacy platform within this network. We envision leveraging these partnerships to raise awareness and foster meaningful discussions about the prevalence of rare diseases in rural Colombia. We will also be able to strengthen the content delivered through our educational initiatives. Additionally, the technical expertise provided by the Prize team would inform and strengthen the efficacy of our community-driven interventions. Financially, the Prize would support KIHMI in expanding our reach to more families and enhancing their quality of life through participation in our projects. 

We are particularly drawn to the Amgen Prize based on the dimension that aims to optimize holistic care for people with rare diseases and their caretakers—including physical, mental, social, and other types of support. With your support, KIHMI will be able to scale our impact and replicate our solution in other communities grappling with similar rare neurodegenerative conditions. This support is particularly critical as prior funding for KIHMI’s projects is set to sunset by the end of this fiscal year. We are committed to ensuring that ongoing projects are not disrupted, which is why we are pursuing numerous avenues of partnership to sustain KIHMI’s projects after current funding ends.  

The Amgen Prize will help finance the operational stages of our pilot projects. A significant technical barrier is the lack of human capital needed to gather and analyze data. Having a qualified team to manage our AWS services, social media, and website would add significant value and exposure to our work. The Prize would also support the in-country development and implementation team, facilitate transportation to communities, and enable participation in global conferences. These activities align with our mission and open doors for additional collaborations and financial partnerships. 

After decades 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 to the development of an adaptation of the “Do No Harm” (DNH) framework for sustainable social development, orchestrated by the KIHMI team. Our social model 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 model for social development, our in-country team is well-positioned to mitigate the negative impact of rare neurodegenerative diseases in the communities where we work under the strong guidance of Colombian-native Olga Lucia Parga Nates, Director of Social Implementation. Olga Lucia has served as KIHMI’s leader and project coordinator since 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 and her team and her team have used the model as a road map along with 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 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, when a community faces food insecurity, we engage residents in focus groups and collaborative workshops to gather their insights and ideas. Our team, composed of Colombian natives deeply familiar with the cultural and socio-economic landscape, collaborates closely with the community to design and implement culturally relevant solutions that address actual needs and leverage existing ancestral knowledge and skills. By providing individualized mentorship, we empower community members to take ownership of the initiatives. Regular feedback and continuous communication allow us to dynamically adapt strategies to meet evolving needs. This approach ensures long-term sustainability and genuine community empowerment that can sustain several generations. The DNH model, as demonstrated in these communities, is not just a framework but a living, evolving practice that grows with and within the community, echoing the resilience of our communities.

KIHMI has two general impact goals. Our first goal is to confirm and validate the model of social solutions based on the adaptation of the Do No Harm framework (KIHMI model). Our second impact goal is to analyze the variability of the change in the negative social impact of the disease in the communities where the model has been piloted.  

To advance the first goal in year one, we will move all current projects to the next step in the model. To advance the second goal in year one, we will analyze the data of the projects that have already reached step #7 of the social model. 

Over the next 5 years, KIHMI will advance all social projects to Step # 7 of the model in order to have the required data to confirm Goal #1 of validating the model of social solutions. For Goal #2, we will then analyze this data to see how the negative social impact of rare diseases was mitigated in the communities where the social projects were designed and implemented using the model. 

A main component of the impact analysis of the model is based on a statistical pairwise comparison of the socioeconomic inclusion for disabilities index between the end of step 1 versus the index at the beginning of step 7. This will be performed through a parametric pairwise T test, with a confidence margin of 5%. 

The model also includes two main progress assessment evaluations. The first one occurs during step 4 (feedback loop), through the collection of qualitative data generated through structured interviews and focus groups. These qualitative data will be evaluated through standard discursive and linguistic analysis methods (quantification of positive versus negative expressions). These results will be used to implement any necessary course corrections for the subsequent step (5). 

The second occurs during step 6 (implementation). At this stage, the same qualitative data will be collected and evaluated with the same method throughout step 6. This will lead to a continuous adjustment of the execution of step 6. In addition to the qualitative data and methods for this progress assessment evaluations, step 6 also includes the collection of quantitative data on participation metrics (new participants, participant attrition, completion of tasks) These quantitative data will be analyzed through descriptive statistics (frequencies, proportions, rates, and trends), to be used to further inform and refine the implementation of step 6. 

Finally, all throughout step 7, when the community adopts and intrinsically continues using and applying the tools and skills provided by the model, the same qualitative data and evaluation will be performed. Additionally, step 7 includes a passive collection of qualitative data, which will be analyzed regularly in the same fashion. With this, specific reinforcement plans can be designed and implemented, with the aim of progressively minimizing the need for reinforcement. This guarantees the success of this final step. 

Our theory of change is based on the belief that by involving community members in the design and implementation of interventions, we can create more effective and sustainable solutions. To better understand the community's perspective, we have conducted interviews with all social players in the community, including local government officials, first responders, churches, schools, patients, families and caregivers. These interviews revealed the profound impact of the disease, including negative stigma, exclusion, isolation, financial stress, and hopelessness. In addition to interviews, we review publications and government data to establish state-of-the-art health practices and identify gaps in current approaches. Patients also often reported feeling exploited by decades of invasive medical research that offered no substantial benefit in daily life, reinforcing the necessity for a community-driven model.  

Our organization will achieve the following outcomes among patients affected by rare neurodegenerative diseases, their caregivers, and the community at large through their participation in KIHMI social projects:  

1. Knowledge & Skills: Enhanced local capacity to implement sustainable development initiatives; Improved capacity for caregivers and community leaders to support individuals affected by neurodegenerative diseases. 
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 nutritious foods, including regional crops recommended for managing neurodegenerative disorders; Reduced prevalence of hunger and malnutrition among participating families; and Increased adoption of healthy behaviors and practices within households and communities. 
4. Economic Empowerment: Improved access to economic opportunities. 
5. Sustainability: Enhanced environmental stewardship and resilience-building initiatives within the community; Expansion of locally produced crops and artisanal goods; promotion of recycling and reuse of materials, including plastic and agricultural waste. 

The KIHMI Solution team is led by Olga Lucia Parga Nartes, who works full-time and resides in Arizona. Renee Cowan, based in California, conducts meetings with Olga Lucia and the team in Colombia. Additionally, the D.K. Kim Foundation's five-member strategic board, along with multiple US consultants and partners, are actively involved in advancing the KIHMI initiative. Olga Lucia regularly communicates with the rest of the KIHMI team and community members through WhatsApp, supplemented by in-person visits to Colombia. We currently have 11 part-time in-country KIHMI team members implementing our solution, with some residing in Algarrobo and Juan De Acosta.  

KIHMI began in 2017 in partnership with the USC School of Pharmacy. Since then, we have continued to develop, design the model of social solutions based on the adaptation of “Do No Harm” framework, and launch projects that are categorized under the four pillars: Infrastructure and Housing; Health and Wellbeing; Communication and Education; and Solidarity Economy and Sustainability for the past seven (7) years.

The KIHMI 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 model of social solutions based on the adaptation of the “Do No Harm” framework, 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. 

KIHMI’s business model is centered on the model of social solutions based on the adaptation of the Do No Harm framework (KIHMI model); which enables us to deliver holistic community-centered programs to enhance the quality of life experienced by individuals and households affected by rare neurodegenerative diseases residing in rural municipalities within Colombia. Key beneficiaries include HD patients, their caregivers, and community members at risk of HD and other rare neurodegenerative disorders, who often face limited access to specialized medical care, social stigma, and financial hardship.  

Our business model addresses the most pertinent community needs among HD-affected communities by involving community members in the design and implementation of interventions. This active-participatory approach ensures that the immediate needs of the local community are met and heard, while simultaneously strengthening their long-term resilience. By bridging gaps in medical knowledge, reducing social stigma surrounding HD, addressing nutritional deficiencies, and providing economic opportunities, our interventions create a holistic support system for our beneficiaries.  

Educational projects like "Click" engage students and youth in identifying and designing social problems and solutions for environmental issues. "Vido Estilo K” equips kids ages 6-12 in developing soft skills, while “Vido Estilo K2" fosters awareness in young teens about their value and place as an individual, in their community and throughout the globe. "Visionados" trains teachers and community leaders in an inquiry-based learning model. "La Ruta H" creates space for the community to share their perspective of their daily reality. Our nutritional and agricultural support, exemplified by the "El Jardin" project, addresses the nutritional needs of the community and increases the opportunity to increase financial income. Health and well-being initiatives, such as "Jornada de Bienestar Social" and "Mirados de Amor," focus on reducing social isolation and stigma. Economic empowerment is promoted through Telas Que Cuidan, which provides technical training in sewing and design, along with business and financial literacy skills, empowering women caregivers to become entrepreneurs and enhance their economic stability. We deliver these services through a combination of in-person engagement, digital platforms, and collaborations with educational institutions. Through our comprehensive approach, we aim to provide essential support, resources, and opportunities for improving the quality of life for rural Colombians affected by HD and other rare neurodegenerative diseases.  

In the past, the KIHMI initiative was funded by the DKKF, as part of a partnership with USC School of Pharmacy. Over the past seven years, a myriad of projects has been designed under the model of social solutions based on the adaptation of the “Do No Harm” framework. These projects are currently running in various stages of the model. Unfortunately, the initial investments are ending. 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, which is on track to be established by the end of 2024. As we prepare for KIHMI to become an independent initiative, we have ramped up grantmaking efforts tremendously. We currently have several planned and/or pending applications to various organizations, including Friends of Colombia ($1,500), Draper Richards Kaplan Foundation ($25,000), Conservation, Food, & Health Foundation ($25,000), the CS Fund, and the Mitsubishi Corporation Foundation for the Americas (MCFA). In addition, we have existing and future social campaigns raising funds from products developed by the community to continue specific projects. We have also received external financial and in-kind donations from stakeholders and partners in support of the KIHMI initiative. We will continue fundraising and grantmaking efforts, while also leveraging our pre-existing relationships with higher education institutions to further discuss the most sustainable avenue for KIHMI.