SciFam is a four day, in-person, neuromuscular conference for stakeholders in congenital muscular dystrophy, nemaline myopathy, and titinopathy.

While there will not be a virtual attendance option this year, we plan to host an online event sometime following the conference. Stay tuned for more information later this year.

 

Dates

• Friday, August 1: Afternoon Welcome Reception for all attendees, Evening Social Activities
• Saturday, August 2: Affected/Family Plenary and Subtype-Specific Programming, Teen+Young Adult programming, Kids Camp, Evening Social Activities
• Sunday, August 3: Affected/Family Plenary and Subtype-Specific Programming, Bonus Sessions (Quality of Life topics), Kids Camp, Poster Session for all attendees
• Monday, August 4: Invitation Only Scientific Symposium, Evening Reception and Evening Poster Session for Researchers & Clinicians
• Tuesday, August 5: Invitation Only Scientific Symposium and Afternoon Poster Session for Researchers & Clinicians

Agenda

While specifics are still in development, the preliminary agenda can be found at: scifam.info/2025-agenda. Check back often for updates.

Scientific Symposium

On Monday, August 4 - Tuesday, August 5, we will host the Scientific Symposium, this year scheduled to follow the Family Conference.

This invitation-only meeting is a forum for researchers and clinicians to present cutting-edge findings, discuss emerging therapies, forge collaborations, and set research priorities for the five primary subtypes of congenital muscular dystrophy, nemaline myopathies, and titinopathies. This is a very high level meeting, that will lean heavily on scientific language and understanding (not lay-friendly).

As an affected individual, family member, industry representative, or other stakeholder, you may request an invitation to join this meeting during registration. Seating is limited for those who are not researchers or clinicians working in the above mentioned conditions.

Children under the age of 12 will not be permitted to join the meeting, and no childcare will be available on these days.

As our presenters may share unpublished work, all Scientific Symposium attendees must sign a confidentiality statement before joining the meeting on both days, and participants may not take photographs of the presenters or their slides. Please respect this rule and those working to identify treatments for our community.

 

Conference Venue & Hotel Reservations

Hilton Philadelphia at Penn's Landing
201 S Christopher Columbus Bl
Philadelphia, PA 19106 USA

All attendees wishing to book a standard non-accessible room (or rooms) must use the link below, created specifically for our event. Please do not book your accommodations with the conference venue separately as we are liable for filling a considerable number of rooms, and you won't receive our group discount.

scifam.info/2025-hotel-reservations

Room rates are $199 per night, plus tax. Any charges made to your room for ancillary services are your responsibility, and will be charged to your method of payment upon check out.

You may customize check-in and check-out dates and the number of beds (1K/2Q) during booking, and you may request adjoining rooms. If available, rooms may be booked up to 3 days before, and 3 days after the conference. Additional dates will need to be added separately by contacting the hotel directly.

Accessible rooms are extremely limited. If you can manage your stay in a standard room, please book your reservations using the link above.

If you require an accessible room, please contact us with the following information:

• Your Name
• Affected Individual's Name
• Affected Individual's Age
• Neuromuscular Subtype (CMD, NM, TTN)
• Type of room needed (roll-in shower or accessible tub)
• Specify 1 King or 2 Queens

We will get back to you as soon as possible to let you know whether we have an accessible room to offer you, or if you will need to identify alternative lodging. If we do have a room for you, we will send an invoice that must be paid within 15 days to hold your accessible room.

Once all accessible rooms are spoken for, this information will be amended to indicate that no more accessible rooms are available at the conference venue.

Note: Given the short supply of accessible rooms, families with affected children are very unlikely to be assigned this room type. As an alternative, you may choose to book your room offsite, at a different hotel or an Air B&B-style rental.

Accessible Room Alternatives

Philadelphia Marriott Old City (0.2 miles from the venue)
One Dock St
(215) 238-6000
marriott.com/en-us/hotels/phlmo-philadelphia-marriott-old-city/overview
12 (unspecified) accessible rooms, no shuttle.

 
Penn’s View Hotel (0.3 miles from venue)
14 N Front St
1-215-922-7600
pennsviewhotel.com
4 (unspecified) accessible rooms, no shuttle.

Holiday Inn Express (0.6 miles from venue)
100 N Christopher Columbus Bl
1-215-627-7900
ihg.com/holidayinnexpress/hotels/us/en/philadelphia/phlpl/hoteldetail
9 accessible rooms (3 with roll-in showers), no shuttle.

Kimpton Hotel Monaco Philadelphia (0.4 miles from venue)
433 Chestnut St
1-215-925-2111
monaco-philadelphia.com
4 accessible rooms (one with a roll-in shower), no shuttle.

Renaissance Philadelphia Downtown Hotel (0.4 miles from venue)
401 Chestnut St
1-215-925-0000
marriott.com/en-us/hotels/phlpr-renaissance-philadelphia-downtown-hotel
7 roll-in shower rooms, no shuttle.

Wyndham Philadelphia Historic District (0.5 miles from venue)
400 Arch St
1-215-923-8660
wyndhamhotels.com/wyndham/philadelphia-pennsylvania/wyndham-philadelphia-historic-district/overview
8 wheelchair accessible rooms (4 with roll-in showers), no shuttle.

 

Sponsored Attendees and Scholarships

Cure CMD, A Foundation Building Strength, and Team Titin will provide a limited number of scholarships to affected individuals, caregivers, and families who plan to attend 2025 SciFam but need financial assistance to do so. If you are interested in applying for a scholarship, learn more and apply here.

Sponsored researchers and clinicians, as well as families who are awarded scholarships must still use this link to book hotel reservations.

You will be asked to provide a method of payment at the time of booking, but your credit card will only be charged in the following instances: 

• If your arrival or departure dates are outside of your sponsored accommodation dates, you will be charged for those additional room nights.
• Any ancillary charges made to your room are your responsibility to pay upon check out.
• Reservations may be cancelled up to 3 days prior to your scheduled arrival. Cancellations after this date (or no-shows) will incur a charge for the first night's stay on your method of payment. This charge will be made directly by the venue.
  

If you have any questions, please contact us.

Registration

Affected Community & Unsponsored Researchers/Clinicians

• Adults (18+): $150
• Teens (13-17): $100
• Children (2-12): $50, waived if registering for Kids Camp
  
• Infants (0-23 months): Free

Industry or Commercial Entity Representatives

• $450

Kids Camp

• Programming and Activities for Children ages 2-12 for the duration of the Affected/Family Sessions (Saturday & Sunday ONLY).
• Children under the age of 2 may participate in Kids Camp activities at no charge as long as they are accompanied by a personal attendant at all times. Kids Camp Attendants cannot be responsible for children under the age of 2.
• Children must be registered for both days; you may not register for just one day of Kids Camp. There are no exceptions.
• Personal attendants must be registered for the conference.
• Kids Camp attendants will have some understanding about special needs related to a child with a neuromuscular condition. They will escort a child to the restroom, but will not assist with toileting related to mobility limitations. They will also not assist with feeding, suctioning, breathing treatments, or taking medication.
• Children attending Kids Camp along with their own personal attendant will receive a discount. We'd also appreciate any volunteers willing to be a Kids Camp attendant, or to minimally assist Kids Camp attendants while performing personal attendant duties. Please contact us if you would like to offer your assistance.
  
  

Unattended Children		Children Accompanied by a Personal Attendant
1st Child	$300	1st Child	$200
2nd Child	$200	2nd Child	$100
3rd/4th/5th Child (each)	$150	3rd/4th/5th Child (each)	$50

Friday Welcome Reception

On Friday, August 1 from 4:00pm-6:00pm, we will host conference check-in and a free welcome reception for all attendees who plan to arrive that afternoon. Please let us know during registration whether you plan to attend so we can prepare for your arrival!

If your arrival time is later on Friday or sometime throughout the weekend, you can visit the registration desk during conference hours to receive your badge and swag bag.

Saturday Social Events

On Saturday, August 2 from 7:30pm-9:30pm, we will host a variety of social opportunities. There is no charge to participate in these events, please let us know during registration whether you plan to participate.

Meals

All meals are optional, and there are a number of onsite and offsite alternatives. See pricing below should you wish to opt in. Meal pricing has been set by the venue.

Saturday Dinner

No Saturday evening meal will be provided, on or off site.
We encourage you to explore the city and the many restaurants it has to offer. Be sure to check out our Philadelphia Visitor's Guide for some great options!

 

Days Offered	Meal	Adult (Age 13+)	Child (Ages 2-12)
Sat, Sun, Mon, Tue	Breakfast	$49	$29
Sat, Sun, Mon, Tue	Lunch	$64	$39
Fri, Sun, Mon	Dinner	$99	$45

Attendance Policies

All attendees must be registered, and must wear their badge at all times while on the conference floors. This is largely to ensure the safety of our young attendees - that no one who doesn't belong to our stakeholder community can gain access to them. So please make it a priority to pick up your conference badge as soon as possible upon arrival, and remember to wear it at all times while attending sessions. The registration desk will be open during all scheduled sessions. Thank you for your cooperation.

While we will not be instituting vaccination or mask requirements, please be mindful that our affected community members can be particularly vulnerable to illness. So if you are experiencing any transmittable symptoms, please wear a mask, wash your hands frequently, and keep your distance from others attendees. If, during the course of the conference, or in the two weeks following, you are diagnosed with a communicable disease, please contact us immediately.

Refund Policy

Should something come up, and you are no longer able to attend SciFam, fees paid for registration, Kids Camp, and meals may be refunded until May 31, 2025, upon request. After this date, fees paid cannot be refunded as we will have already committed to expenses associated with your attendance.

If cancelling your attendance, you have the option to convert your paid fees as a donation to Cure CMD, A Foundation Building Strength, or Team Titin, from whom you will receive an appropriate gift acknowledgement.

Hotel reservations may be cancelled up to 3 days prior to your scheduled arrival. After this date, the first night will be charged to your credit card by the hotel directly. This includes sponsored attendees.