This year, in addition to plenary and subtype-specific sessions on care (at which you are encouraged to ask generalized questions), we're offering SciFam attendees the opportunity to meet with an expert for a 15 minute, 1:1 session to ask a question or set of related questions specific to a single topic.

Requirements

• You must be of legal age of majority ("adult"), registering for a meeting on behalf of yourself as the affected individual, or your affected child.
  • You may request a meeting on behalf of an affected young adult without a parent or guardian present, but a young adult may not request a meeting directly.
• You must be registered to attend the 2025 Scientific & Family Conference.
• You or your affected loved one must have a preliminary or confirmed diagnosis of one of the following neuromuscular conditions:
  • Collagen 6 Related Dystrophy (Ullrich/Bethlem)
  • Dystroglycanopathy (WWS, MEB, Dystroglycan-related CMD or LGMD)
  • LAMA2-Related Dystrophy
  • LMNA-Congenital Muscular Dystrophy
  • Nemaline Myopathy
  • SELENON-Related Myopathy
  • Titinopathy

Following submission of this form and before a meeting can be scheduled, you will receive an email asking you to provide proof of diagnosis via secure upload by submitting either a genetic report, or narrative summary from a physician.

On this form, you must limit your inquiry to one topic and one type of expert. Your options are:

• Neurologist
• Pulmonologist/RT
• Physiatrist/Physical Medicine & Rehabilitation
• Nutritionist or Gastroenterologist
• Orthopedic Surgeon
• Physical therapist
• Occupational Therapist
• IEP/504 Education Plan Specialist
• Case Management Support*

Should you wish to request another meeting about a different topic or with a different specialist, you may submit this form again. However, a second meeting will only be scheduled if time allows, so be sure to submit your most important inquiry first, or the topic that you cannot otherwise inquire about in one of the scheduled sessions.

Your meeting will be scheduled on Saturday or Sunday morning during the normal conference agenda, depending on the expert's availability.

*Case Management Support: Courtney Jones from the Patient Advocate Foundation will offer 1:1 support for those seeking help with issues around insurance denials, healthcare access, and medical debt crises.

Disclaimer

Information provided during a personalized Q&A meeting is for general informational purposes only and is not intended to be a substitute for professional medical advice, diagnosis, or treatment. While the professional you speak with will make every effort to provide accurate and up-to-date information, this session does not establish a provider-patient relationship.

Participants are encouraged to consult with their own healthcare providers regarding any specific medical concerns or conditions. Do not disregard or delay seeking medical advice based on information obtained during this session.

The organizers and participating professionals are not liable for any actions taken or not taken based on the information provided.

Meeting Is Not Guaranteed

While we will make every effort to match your inquiry with an appropriate expert attending SciFam, we cannot guarantee it due to time limitations, available timeslots, availablity of an expert, and potentially, the nature of your inquiry. If you are comfortable asking your question during plenary or subtype-specific breakout sessions, please use these forums first.

If we are unable to book your requested meeting, you will be notified as soon as possible, but likely no sooner than July 15, 2025.

Personally identifying information and the nature of your inquiry provided in this secure form will only be shared with the clinician you are assigned for the 1:1 meeting.