I am requesting financial assistance to help cover travel and conference expenses so that I/my family may attend the Phelan-McDermid Syndrome Foundation International Family Conference in Aurora, Colorado, from July 15–19, 2026.

Tip: Be direct and specific about what you’re requesting (e.g., “support for travel and registration costs”).

My child, [Name], is [Age] years old and has Phelan-McDermid syndrome (PMS), a rare genetic condition caused by a deletion or change on chromosome 22. PMS can cause a range of medical, intellectual, and behavioral challenges. Common characteristics include intellectual disability, delayed or absent speech, autism, low muscle tone, motor delays, and epilepsy.

There is currently no treatment or cure, but families and researchers are working together to advance care and discover new therapies. More information about the condition can be found at the Phelan-McDermid Syndrome Foundation website.

Tip: This paragraph can be copied directly into your letter, or adapted to reflect your family’s unique experience.

Share a few sentences that bring your child to life, including but not limited to their personality, interests, and what makes them special. For example, mention favorite activities, communication style, or how they connect with others. This helps potential funders understand who they are supporting.

Include estimated costs for airfare, ground transportation, hotel stay, meals, and conference registration. Be sure to explain how much of the total cost your family can cover and how much assistance you’re seeking.

Tip: Funders appreciate a clear breakdown and transparency about what their support will help achieve.

By attending the conference, I hope to gain valuable information to better support and care for [Name], our child with Phelan-McDermid syndrome. The conference provides direct access to leading experts and an invaluable network of other families who share our challenges and experiences.

It will also help us strengthen our family connections and find encouragement in a community that understands our journey.

(Optional: If siblings will attend, mention how this experience will benefit them as well.)

The PMSF Family Conference is a four-day event focused on education, connection, and support for families affected by Phelan-McDermid syndrome.

Sessions will cover research updates, clinical care, and family resources, with presentations and panels on topics such as:

• Clinical trials and emerging treatments

• Regression, GI dysfunction, and epilepsy

• Educational planning and transition to adulthood

• Communication, therapies, and behavioral supports

• Family and sibling support sessions

Attendees have the opportunity to hear from medical professionals, researchers, and experienced caregivers who share practical strategies and the latest scientific insights.

Tip: Funders may not know what the conference entails, so include enough detail to show its impact and educational value. Don’t forget to provide the link: pmsf.org/2026-conference

Dear______:

I am writing to ask for your financial assistance in providing travel and conference funding so that I (or my family and I) may attend the Phelan-McDermid Syndrome Foundation Family Conference, July 15-18, 2026 in Aurora, Colorado.

My son/daughter was born with Phelan-McDermid syndrome. Phelan-McDermid syndrome is a rare genetic disorder involving chromosome 22 that can affect many critical functions in a person’s body — from learning and communicating to eating and sleeping. This genetic difference results in intellectual and physical disabilities that vary from person to person. Some people with Phelan-McDermid syndrome lose essential skills, and most require long-term care and medical attention. There are currently only 3700 people diagnosed with Phelan-McDermid syndrome worldwide.

It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from person to person. In our case, Phelan-McDermid syndrome has affected my child in the following ways. (Insert a description of the physical, behavioral, educational challenges encountered and what you/your child have done to overcome them). (Hint: try to focus on the positive things & not the negative. You aren’t asking for sympathy here; you are asking for funding to help you do one more positive thing related to Phelan-McDermid syndrome.)

Because the syndrome is so rare, the Phelan-McDermid syndrome families are often widely dispersed in each state, and most only have an opportunity to meet at these conferences. We also have the opportunity to learn from a wide range of professionals from all over the world who are knowledgeable about Phelan-McDermid syndrome and its medical, educational, social, and developmental challenges. For most people diagnosed with Phelan-McDermid syndrome, the conference represents their only opportunity to interact with peers who cope with similar challenges.

Further, this conference is designed to support my (our) entire family. The conference provides exciting experiences for children with Phelan-McDermid syndrome and their siblings while their parents attend conference sessions. In addition, sibling support groups are led by trained counselors who provide a safe and fun environment for siblings to meet their peers and share their life experiences and the emotions that stem from having a family member who has multiple physical and developmental disabilities specific to Phelan-McDermid syndrome.

The Phelan-McDermid syndrome conference always provides information on cutting-edge medical, educational, genetic, and behavioral research and provides an opportunity to speak directly with the researchers as to ways to apply their research specifically to (my child’s needs). It strengthens our family’s bond with the worldwide Phelan-McDermid syndrome community of individuals and families who strive daily to deal with the challenges that Phelan-McDermid syndrome brings.  Spending this time with other parents of children and adults with Phelan-McDermid syndrome is invaluable.

The cost for me/our entire family to attend the conference will place a significant financial burden on my family. The detailed costs of attending the Phelan-McDermid Syndrome Foundation Conference are detailed in Attachment 1.  I(/we) have also applied to (list other agencies you have contacted) and have held(/plan to hold) the following fundraisers to help defer these costs (describe the remaining gap between the costs and your resources), but we will still need and appreciate any help you are able to provide.

After the conference, I will be happy to share the information I gain from attending with your organization. I would be happy to speak to your group following the conference with a description of the program and to share information about multi-sensory impaired children/adults in general. I also hope to share the many things I learned at the conference with other parents in the community.

You can contact ______ at ______ to obtain additional information about me/my family, and how beneficial attending this conference will be. [Note: If you include this sentence, you should have already contacted a teacher, therapist, physician, etc,. who has agreed to serve as your sponsor/advocate.] You can also view additional information about Phelan-McDermid syndrome and the conference at the Phelan-McDermid Syndrome Foundation website, pmsf.org.

My contact information is: _______________.

Thank you very much for your consideration.

Sincerely,

SAMPLE for a family of four (4) from 7/15 to 7/19. Please keep in mind this is an estimate and will not reflect your exact expenses.

TRANSPORTATION 

REGISTRATION (includes dinner two (2) nights, all other meals on your own)

HOTEL

MEALS

Dates: July 15–19, 2026
Location: Gaylord Rockies Resort & Convention Center, Aurora, Colorado
Host: Phelan-McDermid Syndrome Foundation (PMSF)
Website: www.pmsf.org

About the Conference

The Biennial Phelan-McDermid Syndrome Foundation Family Conference is the leading international gathering for families, clinicians, researchers, and industry partners dedicated to improving the lives of those affected by Phelan-McDermid syndrome.

The 2026 conference will offer families a unique opportunity to:

• Attend expert-led workshops on medical care, therapies, communication, and behavior supports

• Learn about the latest scientific discoveries and clinical trials

• Connect with specialists, scientists, and therapists who work directly with Phelan-McDermid syndrome

• Participate in sessions for caregivers, siblings, and newly diagnosed families

• Engage in youth and adult programs designed for individuals living with Phelan-McDermid syndrome

• Build community and peer-to-peer support

The PMSF Family Conference is a cornerstone of our mission to support families, improve care, and accelerate research. The information, training, and connections offered during this event help families navigate life with Phelan-McDermid syndrome and contribute to shaping future advances in treatment and care.