Philly Cure HD (Huntington's Disease)

Philly Cure HD (Huntington's Disease) 501c3 Non-profit supporting the local Huntington's disease community. (Greater Philadelphia/southeast (Greater Philadelphia/southeastern PA)

05/29/2026

We posted a clips of this conversation earlier in the month, but we are excited to share the whole episode with Shana Ward today! Learn more at PhillyCureHD.org and check out our fundraising page for HD Awareness month at https://secure.frontstream.com/philly-cure-hd-hd...
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05/29/2026

This month, we're celebrating HD Awareness Month with Sherri, licensed clinical social worker and community connector at PhillyCURE HD.

In this conversation, Sherri walks us through the heart of what PhillyCURE does: virtual support groups for both HD patients and caregivers, a meaningful presence at the Penn HD Center of Excellence, and a growing calendar of community events, from the annual hayride to the upcoming summer kickoff on June 19th.

We talk about what it means to find your people when you're navigating a rare disease. About the difference between being gene positive and being symptomatic, and why that distinction matters for when and how someone reaches out for support.

Also, we talk about the very real hope in the clinical trial landscape right now, and the very real obstacles that keep families from crossing the threshold.

Sherri brings 20+ years as a social worker and a deep love for this community to everything she does. This one's for anyone who has ever felt alone in the HD journey and wondered if there was a place for them.

We are here for you!

🎙 Listen, share, and if you're moved to support the mission, HD Awareness Month is underway. Nine teams are already fundraising. You can start your own page or check our Hd Awareness Month fundraising page here: https://secure.frontstream.com/philly-cure-hd-hd-awareness-month-2026-and-kick

You can also reach out to Sherri directly at [email protected].

05/29/2026

To wrap up hashtag we have a special guest and advocate, Lauren Holder, who shares her story and why the recent roll-back of regulatory decisions surround accelerated approval for HD therapeutics impacts patients and families who currently have no disease-modifying therapies. She also shared how the HD advocacy organizations wrote a letter to regulatory bodies to help support a continued partnership with the HD community as leadership changes occur.

In the podcast we hear more about her journey as a patient advocate, and what HD advocacy looks like for her and how others can get involved in many different aspects of patient advocacy. We enjoyed hearing her perspective that advocacy can look unique for everyone, and every aspect of it matters!

We also have a full circle moment, where she shares her involvement with HD-PACE, who we talked to in week 1 of our newsletter. This team of advocates is developing a resource for the community to access the best HD care and find out what makes great care for HD. To learn more about their initiative, check out their website: hdpace.org and consider partaking in their clinical survey if you've recently received care for HD at any clinic.

If you found this conversation interesting, share it with your network. Also, if you want to directly support patient care and support for these families, consider donating to Philly Cure's HD Awareness month campaign here: https://secure.frontstream.com/philly-cure-hd-hd-awareness-month-2026-and-kick

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In this newsletter we share some exciting new upcoming and ongoing clinical trials in the greater Philadelphia region fo...
05/29/2026

In this newsletter we share some exciting new upcoming and ongoing clinical trials in the greater Philadelphia region for Huntington's disease.

This week we spoke with scientists and the Penn HD Center's care team to see how the HD community can get involved in natural history studies and clinical research. We also spoke with patients from different age groups to see how they perceive clinical trial involvement at their stage of HD.

We're very grateful to the entire community for considering taking part of and supporting community members to participate in this important work. We're excited to share more about these studies as they continue through our work at Philly Cure HD.

To support education, outreach, and support to families considering participating in these ongoing and upcoming clinical trails a small donation can go a long way to ensure they get the support they need. Consider donating or sharing this with your network: https://secure.frontstream.com/philly-cure-hd-hd-awareness-month-2026-and-kick

This week we focused on local HD care, including the unique partnership between Philly Cure HD and the Penn HD Clinic. W...
05/21/2026

This week we focused on local HD care, including the unique partnership between Philly Cure HD and the Penn HD Clinic. We also share another profile from the HD community with a patient perspective on what local support is available and looks like for HD families.

The HD awareness committee asked the social workers of both the HD Care Team at the Philly Center of Excellence and Philly Cure HD how they support the HD community. They shared some exciting updates with us!

Take a moment to read Sherri's answers to what it's like being a caregiver to someone with HD and then don't forget to donate to our HD Awareness Month Fundraiser:

https://secure.frontstream.com/philly-cure-hd-hd-awareness-month-2026-and-kick

This week we asked the HD community what's new in Huntington’s Disease care and caretaking. HD-PACE shared their prelimi...
05/14/2026

This week we asked the HD community what's new in Huntington’s Disease care and caretaking. HD-PACE shared their preliminary results as they continue to assess the current clinical care landscape for HD across the US, which can be found in full detail on their website hdpace.org. We also got input from our own community of patients and caregivers to give us their perspectives on HD care.

We got the chance to ask HD-PACE a few questions, and are excited to share what they’re doing! Our community has participated in their survey, as they aim to assess the current clinical care landscape for HD and use it as leverage to share with the HD community great care sites including working with clinics to improve care outcomes.

Read up on what HD-PACE is doing, take some time to fill out the survey: https://hdpace.org/ and don't forget to donate to our fundraiser!

https://secure.frontstream.com/philly-cure-hd-hd-awareness-month-2026-and-kick

05/13/2026

May is and we are honoring it by talking to people in the Philadelphia area who are a part of the HD community.

Check out this clip from one of our board members, Nancy Hess, podcast where she talks to Shana Ward, a research coordinator at CHOP who is entering the Master of Science in Genetic Counseling program at the University of Pennsylvania this fall. She helps us understand what genetic counseling actually does, and why the choice to test is so individual.

"We always say that knowledge is power, and for some people it is. But for others, that knowledge might be something irreversible that they can't take back, and that just kind of causes a lot more anxiety."

Don't forget to donate to our HD Month fundraiser where funds will go directly to people going through this testing process.

https://secure.frontstream.com/philly-cure-hd-hd-awareness-month-2026-and-kick

We are thrilled to welcome Laura Ohl, PhD, to the Philly Cure HD Board! Dr. Ohl is a biomedical scientist, rare disease ...
12/17/2025

We are thrilled to welcome Laura Ohl, PhD, to the Philly Cure HD Board! Dr. Ohl is a biomedical scientist, rare disease expert, and advocate whose work bridges laboratory research and community engagement. She brings deep expertise in translational research, having led preclinical studies on rare neurodegenerative disorders, and a strong commitment to ensuring that patient voices inform research, clinical care, and policy. She aims to advance patient-centered initiatives, advocacy, and collaboration to accelerate therapies.

Living with Huntington’s Disease can create unexpected financial strain. If your family or a family you know is experien...
12/13/2025

Living with Huntington’s Disease can create unexpected financial strain. If your family or a family you know is experiencing difficulty meeting monthly expenses, The Madden Cancelmo Christmas Fund can assist.
The Madden Cancelmo Christmas Fund is designed to provide assistance and joy to families affected by Huntington's Disease during the holiday season. By applying for this fund, families can receive the support they need to make their holiday season more enjoyable.

Our application process is designed to be easy and accessible, ensuring that all eligible families can participate. Click below for the application and once complete please send to [email protected]

Application deadline extended to 12/15/25

https://files.constantcontact.com/b4e5d424201/bb90e291-4c6a-4af4-9452-ddc794c582d3.docx?rdr=true

This Giving Tuesday, we want to take a moment to express our heartfelt gratitude for your support of Philly Cure HD. Bec...
12/02/2025

This Giving Tuesday, we want to take a moment to express our heartfelt gratitude for your support of Philly Cure HD. Because of you, Philly Cure HD has been a beacon of hope for families grappling with Huntington's Disease, and we cannot thank you enough for your compassionate support. Every dollar helps us provide crucial resources, raise awareness, and advocate for those affected by this devastating disease. Giving Tuesday also marks the start of our annual appeal, one of our most important fundraisers of the year.

The impact of your kindness resonates deeply within our community as it continues to empower families as they navigate their journeys. Your generosity goes directly toward supporting ongoing research, educational programs, and services for families impacted by HD. This Giving Tuesday, we invite you to embrace the spirit of giving and make a difference in the lives of those facing Huntington's Disease.

We appreciate your support and would be thrilled to have you on this journey with us. Let’s work together to create a brighter future for families affected by HD. Thank you for considering this opportunity to make an impact this season.

https://www.mygiving.net/campaign/Philly-Cure-HD-2025-Annual-Appeal

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Philadelphia, PA

Opening Hours

Monday 9am - 5pm
Tuesday 9am - 5pm
Wednesday 9am - 5pm
Thursday 9am - 5pm
Friday 9am - 5pm

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+12152193521

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