Washington Hilton, Washington DC June 27-28, 2020

Organizing body: FSHD Society, June Kinoshita, Chief Strategic Programs Officer

Conference format: Educational lectures, breakout sessions, community development activities

Audience: 250 participants Patients, family members, caregivers, researchers and clinicians

FSHD Connect brings together hundreds of patients, family members, researchers, physicians and health experts for a day-and-a-half of immersive learning and community building. The meeting features talks by thought leaders on the latest in scientific research and medical management of FSHD, living with FSHD, and raising “an army of activists.” Breakout sessions address topics to help patients and family members cope and live better with FSHD.

2020 Sponsor Opportunities Headquarters, 450 Bedford Street, Lexington MA 02420 (781)301-6060 www.fshdsociety.org

“As a company dedicated to developing treatments for patients with significant unmet medical needs, it is imperative that we work to increase awareness—both in the community

and among our employees—of rare diseases like FSHD. Achieving this goal would be exponentially more difficult without our partnership with the FSHD Society.”

— Ravi Kumar, Ph.D., Chief Scientific Officer, Acceleron Pharma

Who we are The FSHD Society is the world’s largest research-focused patient advocacy organization for FSH muscular dystrophy. We are accelerating the development of treatments by investing in high-impact research initiatives, activating and empowering patients and families, and partnering with stakeholders in industry, nonprofits, and government.

Why we do what we do FSHD can rob you of your ability to smile. Weaken your muscles so that simple tasks become a daily struggle. Affect your eyesight and hearing (which can be treated if diagnosed early). For more severely affected individuals whose breathing is impacted, every breath can become a fight to survive. You can unknowingly pass the condition on to your children. There is no cure for this life-long, progressive disease that affects nearly 1 million men, women, and children. But today, with the tremendous advances made in our understanding of FSHD, there is genuine hope. We believe a treatment is on the horizon. We invite you to partner with us and position your company as a leader and champion for medical progress and better lives for all.

Why your support makes a difference The FSHD Society has launched a worldwide effort with the aim of getting treatments to the market by the year 2025. As our partner, you are helping us reach this goal—what a powerful message to share with your staff, customers, and clients!

CONNECT WITH YOUR STAKEHOLDERS. Your stakeholders—investors, partners, employees, clients, customers—care about which companies they do business with. Sponsoring an organization that is deeply meaningful to them is a great way to communicate your core values.

GIVE YOUR STAFF SOMETHING TO SMILE ABOUT. Responsible companies like yours know how important it is to get staff involved in giving back to the community. Talk to us about how your people can participate in our programs and events.

+ Benefits subject to approval by the FSHD Society. Sponsor recognition cannot include product advertising.

2020 Sponsor Opportunities

Headquarters, 450 Bedford Street, Lexington MA 02420 (781)301-6060 www.fshdsociety.org

LET’S MAKE THIS A WIN-WIN!! We want to drive value to you. This begins with a conversation about how you wish to benefit your business by partnering with the FSHD Society. What type of visibility are you seeking? What about interactions with our supporters, patients and families, clinical leaders, and researchers? Are there special experiences we can help make happen for your employees or clients? Please review the opportunities below and contact June Kinoshita, Chief Strategic Programs Officer, to begin our conversation. Email june.kinoshita@fshdsociety.org or call (781)301-6649. The FSHD Society is a 501(c)(3) non-profit organization.

STATS AT YOUR FINGERTIPS Print and electronic media reach

Website www.fshdsociety.org 300,000 pageviews per year Facebook (~4,500 followers) 50,000 engagements and 450,000 impressions per year Twitter (1,500 followers) 380,000 impressions per year FSH Advocate magazine, published 3x per year 5,000 hard-copy and 7,600 electronic subscribers Email news and event alerts 2~3 per month to 7,600 subscribers

2020 CALENDAR Therapeutic Accelerator Initiative 4 workshops in 2020 Externally-led Patient Focused Drug Dev Meeting

TBD April 2020

By invitation-only to partner companies

27th Annual International Research Congress USA, Washington DC

June 25-26 180 academic & industry researchers

FSHD Connect USA, Washington DC

June 27-28 250 patients and family members, researchers, clinicians, and advocacy leaders

Global Patient Alliance meeting Location TBD

Summer 35 international patient advocacy leaders

Family Day Conferences 10 family days across the U.S. planned TBD 500-750 attendees total for year

Walk & Roll to Cure FSHD 25+ events planned for 2020 across the U.S. Spring and

fall TBD 3,000 participants total for year

Chapter and Support Group Programs Year-round ~1,500+ attendees per year

CHAPTER & LOCAL* SUPPORT GROUP LOCATIONS Pacific Coast Mountain states Southwest Southeast Midwest Northeast

Pacific Northwest San Francisco Sacramento/Davis Los Angeles San Diego

Colorado Salt Lake City

Arizona Austin* Dallas* Tulsa*

Atlanta East Tennessee North Carolina Tampa Naples Daytona Central Coast FL Miami*

Chicago Columbus Kansas City Milwaukee Minneapolis* St. Louis

Baltimore & DC Boston Connecticut New York City Philadelphia Western PA Rochester, NY*

2020 FSHD CONNECT SPONSOR LEVELS Opportunity Sponsor benefits*

See “Stats at your fingertips” on page 3 for data on audience reach. $20,000 – Platinum sponsor

Exclusive Top-billing as conference sponsor. 8 free registrations. Table top exhibit. Name on conference lanyard. Wifi sponsor recognition. Prominent logo on mobile app, conference website, conference program, projection screen, podium, and in FSHD Advocate magazine. Weekly recognition on social media for two months before conference.

$15,000—Gold sponsor Banquet sponsor Exclusive

Recognition as our community leadership honors banquet underwriter. 8 free registrations. Table top exhibit. Sponsor giveaway at each banquet seat. Prominent logo on mobile app, conference website, conference program, projection screen, banquet program, and in FSHD Advocate magazine. Bi-weekly recognition on social media for two months before conference.

$10,000 – Silver sponsor 2 available

4 free registrations. Table top exhibit. Logo on mobile app, conference website, conference program, projection screen. Monthly recognition on social media for two months leading up to conference.

$7,500 – Bronze sponsor 2 available

Lunch sponsor. 4 free registrations. Logo on conference website, conference program, projection screen, and on lunch table. Monthly recognition on social media for two months leading up to conference.

$5,000 – Breakfast/Break sponsor 6 available

2 free registrations. Posterboard signage at breakfast or break Logo on conference website, conference program, projection screen. Monthly recognition on social media for one month leading up to conference.

$2,500 –Event Sponsor 1 free registration Logo on conference website, conference program, projection screen. Monthly recognition on social media for one month leading up to conference.

Scholarship sponsor $800 per travel scholarship

Logo on conference website, conference program, projection screen. Monthly recognition on social media for one month leading up to conference. Acknowledgement of support by scholarship recipients.

Sponsor a la carte items • Table top exhibit. Display table in main foyer. Sponsor must arrange forshipping, electrical power directly with hotel. $2,000 (8 available)

• Chair drop. Have us distribute your literature to all attendees by placingit on the main lecture hall chairs. $1,000 (4 available)

• Door giveaway. Distribute a free item at the main entrance to thelecture hall. $1,000 (4 available)

Questions? Contact June Kinoshita, Chief Strategic Programs Officer, FSHD Society. Email june.kinoshita@fshdsociety.org or call (781)301-6649.

+ Benefits subject to approval by the FSHD Society. Sponsor recognition cannot include product advertising.