Our Story
Sailing is our anchor. It all began with a sailing session between two high school students. That same holiday, an eye-opening encounter with the families of rare disease patients spurred another mission in our hearts. From these dual inspirations, Sails of Hope was born.
Today, our charity sails beyond our initial horizons, touching shores in multiple cities worldwide. Together, we are on a journey to stand with those fighting rare diseases.
Sails of Hope founder Danny delivering a speech to spread our impact at the Westminster Abbey, London
While individual rare conditions might live up to their name in terms of individual incidence, their collective impact is both profound and often overlooked. Over 6,000 to 7,000 distinct rare diseases exist, and when we look at the numbers cumulatively, the effect is staggering. One in every 17 people in the UK, for instance, will be diagnosed with a rare disease at some point in their lives. Yet, there is a glaring disparity in research funding, with conditions like cancer receiving exponentially more financial support. We champion the cause of those with rare conditions, emphasizing that their collective prevalence demands equal attention, compassion, and most importantly, funding, to drive critical medical research and support.
Why Rare Disease?
Sails of Hope co-founder Kent presenting the ideas in the UPenn Wharton Leadership Business World Program
What We Do
Sails of Hope is a youth-led organization dedicated to raising awareness and providing support for individuals and families affected by rare diseases. Through a combination of public awareness campaigns, educational programs, and fundraising events like charity sales, marathons, and concerts, we aim to bridge the gap between patients, the medical community, and the public. Our initiatives include direct support for medical research, patient outreach, and educational resources, with a focus on creating a global network of care and compassion for those affected by rare diseases.
Time Line
25 January 2023
Establishment of SoH
Danny and Kent founded Sails of Hope in London. This marks the establishment of Sails of Hope as a charitable organization, and our initial meeting of the board of directors to discuss and plan the organization’s activities. During this meeting, we solidified our objectives by setting a specific fundraising target for rare disease research and securing initial financial support from investors.
1 February
First Branch in London
The first branch of Sails of Hope was established in London. A public awareness speech was held at Dulwich College, London, and recruitment efforts began to enlist like-minded peers as members of the organization. Collaborations with several boat clubs in London commenced, initiating the monthly Sails of Hope Sailing Race for fundraising.
15 February
Patient and Family Interviews
Interviews were conducted with patients and families affected by rare diseases, including progeria, Williams Syndrome, and Spinal Muscular Atrophy (SMA). These interviews provided firsthand insights into the challenges and requirements of those affected, clarifying organizational objectives and strategies.
3 March
Professional Collaborations
Recognizing our limitations as high school students, proactive engagement with professionals from universities, hospitals, research institutions, and pharmaceutical companies began to seek collaboration opportunities.
8 April
Expansion to China
Sails of Hope expanded to include students from Shanghai and Shenzhen, establishing branches in these cities. The operational model of the London branch was replicated, including public awareness speeches, recruitment drives, and regular fundraising activities.
Considering the limitation of access to sailing for the majority of the public, we have launched a new campaign called Sails of Hope Charity Run, where it allows our supporters to access to rare disease support more easily: just simply go for a run and submit your running record with a picture of our Sailing Sign, and our sponsors will donate one dollar for you for every kilometer you run: https://www.sailsofhopecharity.com/run.
13 April
Public Awareness Campaign in Shanghai
On April 14, 2023, we launched its our public awareness campaign in Shanghai. Over the course of three weeks, the team visited three primary schools, four secondary schools, and one university, educating students about rare diseases and inspiring future generations to advocate for underrepresented patients. During this campaign, we also expanded our organization by recruiting new members to join our cause. Click here to view more.
22 April
Sails of Hope Charity Run in Xuhui District, Shanghai
On April 22, 2023, Sails of Hope held its first charity run in Xuhui District, Shanghai. This debut event was a great success, with over 20 participants from various age groups, including children, adults, and retirees, all coming together to raise awareness for rare disease patients. This debut event not only marked the beginning of our charity efforts but also demonstrated the strong community support for our mission.
1 May — 1 June
Rapid Expansion and Partnerships
In this period, Sails of Hope has undergone a series of rapid expansion. We set up branches in two more cities: Hangzhou, and Chongqing, and recruited 20+ permanent members to our organization. At the same time, we have formed partnerships with several renowned research institutions, enhancing our ability to make a meaningful impact in rare disease research.
23 June
Charity Drama Performance
We held a rare disease themed charity drama performance in our branch at Shenzhen, marking the start of our creative approach to fundraising, using a charity drama performance to engage the community and generate donations.
21 July
Traditional Umbrellas Workshop
A Traditional Umbrellas Workshop fundraise took place at the Hangzhou branch, combining cultural enrichment with public awareness for rare diseases. Click here to view more.
23 July
Knowledge Exchange Workshop
We held a workshop at Shenzhen, providing a platform for knowledge exchange and awareness building, facilitating discussions on rare diseases and their impact on individuals and communities.
5 August
Wine and Tea Fair
In our branch at Changning, Shanghai, we presided over a wine and tea fair convening professionals from different fields for a general discussion on the topic of rare disease. We had the opportunity to invite professionals from Johnson & Johnson, Shanghai Jiaotong University, Zhejiang University, and Ruiou Rare Disease Foundation. While enjoying our exquisite wine and tea, the participants generously donated to Sails of Hope to support rare disease research while delivering talks about the most recent advances in their fields. Click here to view more.
6 August
Fundraising with HSBC
Sails of Hope collaborated with HSBC and held a fundraising activity at the Ritz Carlton Hotel Shanghai. Engaging HSBC private banking customers, we raised numerous funds and delivered our participants with our mission and prospects in empowering those with rare diseases. Click here to view more.
17 August
Beijing Branch Established
We established Sails of Hope Beijing Branch
1 September
Launch of SoH Life Sciences (Sails of Hope Therapeutics)
The startup of Sails of Hope Life Sciences (Sails of Hope Therapeutics) marked our vision beyond raising funds and public awareness for rare diseases. Our ultimate goal is to cure all rare diseases and end them being a symbol of a ‘dead sentence’. To achieve this faster, Sails of Hope has dedicated the past months to forging a research team for the development of novel therapeutics to treat Rare diseases. Up until Sep 1, 2023, we have engineered two potential drug candidates with the potential to treat progeria, Amyotrophic Lateral Sclerosis (ALS), and rare forms of cancer. Currently, we are at the stage seeking for angel investors to transform our theoretical design into clinical outcomes that can benefit patients from the rare disease community.
3 September
Sailing Race at Shenzhen Bay
Sails of Hope organized a sailing race at Shenzhen Bay, attracting 15 passionate sailors to join the cause. Through this exciting event, we successfully raised 3,000 CNY to further support rare disease research and patient care.
20 September
Chengdu Branch and Charity Run
We established Sails of Hope Chengdu Branch. At the same time, more than 60 members participated in Sails of Hope Charity Run.
Art Exhibition Fundraiser
We held a rare disease themed art exhibition. Contributed by four talented artists, our art exhibition presented the public with six art masterpieces, some pieces that gained particular public attention include Irresistible Fate: The Battle of ALS, Parallel Worlds: Embracing Mental Diversity, Fractured Synapse: The ALS Struggle. Some of these paintings were later subject to auction and raised a laudable amount of over $4000. Click here to view more.
17 December
Rare Disease New Year Banquet
Together with our long-collaborated foundation, Ruiou Rare Disease Foundation, Sails of Hope and its members from Hangzhou and Shanghai collaborated in the organization of the 2023 Rare Disease New Year Banquet at the Alila Wuzhen Hotel in Zhejiang, China. With the support of 105 esteemed guests, we successfully raised an incredible total of ¥985,492. Three companies also generously provided technical donations. The entire proceeds from the banquet will be dedicated to supporting rare disease research initiatives, reinforcing our collective mission to make medical care accessible to everyone. This banquet also allowed us to reinforce our collaboration with leading pharmaceutical companies, prestigious research institutions, and governmental organizations. As we step into the new year, Sails of Hope and Ruiou remain committed to making a lasting contribution to the vision of "medication for every rare disease patient." Click here to view more.
23 December
Christmas Fundraising Campaign
Contributed by volunteers from Beijing, Sails of Hope launched a Christmas-themed fundraising campaign across high schools in Beijing. Joined by over 160 participants, we have successfully raised more than ¥20000. It is very impressive to see such effort being made by just high school students and their will to help the minorities of the Rare Disease community at such a young age.
1 January 2024
Singapore Branch Established
We established our branch at Singapore
10 January
Malaysia Branch Established
We established our branch at Malaysia
27 January
Public Awareness Event at Renaissance Hotel, Shanghai
Sails of Hope’s Shanghai and Malaysia teams co-led a public event at the Renaissance Hotel in Shanghai, gathering over 30 participants. The event aimed to raise awareness about rare diseases through heartfelt discussions and personal stories. It concluded with a meaningful postcard exchange, where participants wrote messages of hope and encouragement for rare disease patients. Check here for more details.
12 February
Chongqing Wine and Tea Fair
Similar to our wine and tea fair at Shanghai in 2023, we held another similar event in our branch at Chongqing, China. Inviting professionals from Chongqing Medical University and West China Hospital, discussions on building a regional network for rare disease research and patient care have been made.
31 March
Global Presence and Growth
With over 50 permanent members from more than 20 schools across 5 countries, Sails of Hope continues to make significant progress towards its goal of shaping a future without rare diseases.
14 Apr
Successful In Silico Modeling Results
he Sails of Hope Life Sciences team announced successful results from in silico modeling of their newly developed drug candidates. This breakthrough in computational modeling represents a significant advancement in our efforts to treat rare diseases. The in silico models have demonstrated promising efficacy and safety profiles for the drug candidates targeting progeria, Amyotrophic Lateral Sclerosis (ALS), and expanding our applicability to other proteinopathies including Parkinson's and dementia . These results pave the way for further preclinical studies and bring us closer to transforming theoretical designs into tangible clinical outcomes that can benefit patients worldwide.
22 May
2024 Global Rare Disease Research Forum & 2nd China Rare Disease Research and Translational Medicine Conference
Sails of Hope participated in the 2024 Global Rare Disease Research Forum and 2nd China Rare Disease Research and Translational Medicine Conference organized by Ruiou Rare Disease Foundation and Fudan University. This global forum brought together experts and stakeholders to discuss rare disease research and international collaboration, and our team played a key role in preparing materials, translating documents, and facilitating the event’s success. Click here to view more.
26 May
Collaboration with Northwestern University China
Sails of Hope formed a strategic collaboration with Northwestern University in China, specifically focusing on tackling Mucopolysaccharidosis (MPS) I and II. This partnership aims to combine the expertise and resources of both organizations to advance research and develop effective treatments for these rare genetic disorders. By leveraging Northwestern University’s advanced research facilities and Sails of Hope’s commitment to rare disease advocacy, this collaboration marks a significant step towards finding cures and improving the quality of life for individuals affected by MPS I and II.
10 June
Westminster Abbey Speech
Danny delivered a powerful speech at Westminster Abbey, highlighting the milestones achieved by Sails of Hope and the critical importance of continued support for rare disease research. This event brought together supporters, researchers, and policymakers, reinforcing the collective mission to combat rare diseases. Click here to view more.
8 July
Follow-Up Visit to SMA Patients in Rural China
On July 8, 2024, Our greater China team, led by founder Danny, visited a family in rural China with two SMA patients, Iris and Mark (pseudonyms). The team brought gifts, books, and postcards with messages of encouragement from previous public awareness events. Recognizing the children’s limited access to quality education, Sails of Hope organized free online tutoring in English, Math, and Science, provided by students from Oxford, Cambridge, and Ivy League schools, helping to bridge their educational gap. Click here to view more details.
22 July
Oxford Charity Sale
Sails of Hope hosted a charity sale event in Oxford to raise funds for rare disease research. The event featured handmade crafts, donated items, and unique experiences for sale, with all proceeds going toward supporting research initiatives for rare diseases. The sale attracted locals, tourists, and students, helping spread awareness about rare diseases while contributing to research efforts. Click here to view more.
29 July
Sailing event at Dianshan Lake, Shanghai
On July 29, 2024, we hosted a successful sailing race at Dianshan Lake, Shanghai, with more than 30 participants. This group included both seasoned sailors (amateur and professional) as well as first-time sailors, who were guided by our volunteer sailors. The event not only introduced newcomers to the joys of sailing but also raised over 6,000 CNY to support our mission.
18 August
Concert in Beijing
On August 18, 2024, Sails of Hope held a concert in Beijing to raise awareness and support for rare disease research. The event featured performances from local artists and musicians, attracting a large audience. Proceeds from the concert were dedicated to advancing rare disease research and providing support for affected families, further amplifying our mission to bring hope to those battling rare diseases.
6-8 September
13th China Rare Disease Summit
At the 13th China Rare Disease Summit, hosted CORD Rare Disease Center, and Shanghai Jiao Tong University, more than 200 experts and leaders gathered to discuss rare disease diagnosis, treatment, and research. Our volunteers played an integral role in logistics, coordination, and patient engagement activities, including the “医患交流会,” where patients expressed their stories through art by drawing their superheroes. Click here to view more.