Imagine a world where a devastating diagnosis no longer means a death sentence for a child.

At the United MSD Foundation, this vision fuels our every action. We stand alongside families facing the brutal reality of Multiple Sulfatase Deficiency (MSD), a rare and fatal genetic disorder that steals the light from vibrant young lives.

Currently, when families receive this heart-wrenching news, they are met with silence – a void where treatment options should be, leaving them with the sole, agonizing task of providing comfort until their child is lost.

THE CRUSHING REALITY OF MSD

MSD is a cruel thief, progressively robbing children of their abilities: their mobility fades, their vision dims, their cognitive function declines, and ultimately, their lives are tragically cut short. Families are left adrift in a sea of helplessness and isolation, grappling with immense medical, emotional, and financial burdens, often with limited access to specialized knowledge or a supportive community. The rarity of MSD means research funding is scarce, leaving potential breakthroughs languishing in laboratories, just out of reach for the children who desperately need them.

WHY NOW IS THE TIME

While MSD is rare, the urgency of finding a treatment resonates deeply within the broader community. The profound suffering endured by these children and their families calls upon our shared humanity to offer support and alleviate their burden. The UnitedMSD Foundation stands as a beacon of hope, uniquely addressing the critical gaps in research, support, and awareness that no other organization currently fills.

THE URGENT NEED: REMOVING BARRIERS TO HOPE 

We stand on the cusp of a potential breakthrough.

Gene therapy offers a promising avenue for treating MSD, and clinical trials are the crucial next step. However, a significant barrier stands in the way: travel costs. Families often live far from sites, and the expenses associated with travel, accommodation, and time away from work can be insurmountable, preventing eligible children from accessing this potentially life-saving opportunity.

Our Urgent Request: Invest in Access, Invest in Hope

The United MSD Foundation has established a Clinical Trial Travel Support Fund to remove the financial burden for families, ensuring that every eligible child has the chance to participate in the upcoming gene therapy clinical trials.

Our goal is to raise $300,000 to support 10 clinical trial participants.

Your philanthropic investment will provide a stable foundation, allowing us to:

• Predictably support families as clinical trial timelines unfold
• Maximize the impact of the research by ensuring full participation
• Demonstrate the unwavering commitment of our community to finding a cure

We invite you to become a vital part of this pivotal moment in MSD research. Your multi-year investment in our Clinical Trial Travel Support Fund will send a powerful message of hope and provide tangible assistance to families desperately seeking a future for their children. 

Your Partner in Hope

Children diagnosed with MSD face a devastating reality—no cure, no treatment, and a rapidly declining quality of life.

The United MSD Foundation is driving critical research toward a cure and providing essential support to families, including a dedicated Clinical Travel Support Fund to ensure equitable access to a potentially life-saving therapy.

With your sustained investment in our Clinical Trial Travel Support Fund, we can remove barriers to participation, accelerate research, and turn MSD from a fatal disorder into a treatable condition, giving children and families a future filled with hope and the possibility of a longer, healthier life. Thank you for considering a meaningful multi-year gift to the United MSDFoundation’s Clinical Trial Travel Support Fund.

Together, we can turn hope into action and build a brighter future for children with Multiple Sulfatase Deficiency.

To make a donation, you may give online or complete the pledge form found in our campaign packet.

You may also reach out to the Executive Director, Sarah Cortell Vandersypen, with questions or to discuss a gift.