Tag Archives: CureDuchenne Cares

  1. Physical Therapist Haydee Bustos is a Pillar of Strength in the Duchenne Community

    Posted on February 22, 20174:12 pm

      Haydee Bustos has a passion for helping kids, and through her experience as a physical therapist, she discovered an even deeper desire to help kids with Duchenne muscular dystrophy. A fatal genetic disease, Duchenne muscular dystrophy causes muscle deterioration leaving patients, mostly boys, wheelchair bound by their mid-teens and claims their lives by their Read more »

  2. Physical Therapist Darcy Peach Provides Peace of Mind to Duchenne Families

    Posted on January 26, 20173:51 pm

      Darcy Peach discovered her calling to become a physical therapist while undergoing treatment for a volleyball injury in high school. During her treatment sessions, Darcy’s physical therapist took a great deal of care and time in treating her.  She witnessed first-hand the therapeutic and relationship building benefits that occur during the process of physical Read more »

  3. Spotlight on Sandi Preston, PT, CureDuchenne Cares Certified Physical Therapist

    Posted on November 16, 20166:36 pm

      Understanding a patient’s motivation for treatment is the key for a physical therapist to empower that patient for the best outcome. For a patient with Duchenne muscular dystrophy, a terminal disease that deteriorates muscle tissue, this empowerment can be the difference between more cherished ambulatory time or losing their drive for therapy altogether. In Read more »

  4. Spotlight on Jerry Hsu, PT, CureDuchenne Cares Certified Physical Therapist

    Posted on October 12, 20164:28 pm

      A physical therapist is required to take on multiple roles while caring for their patients, and this is especially true when treating a complex condition such as Duchenne muscular dystrophy.  It is these multiple roles and complicated diseases that keep Jerry Hsu, an Orange County, California-based physical therapist, excited about his job every day. Read more »

  5. Learn. Engage. Empower.

    Posted on October 10, 20169:15 pm

      Caring for a child with Duchenne can be daunting, complicated, and often times, isolating. But it doesn’t have to be. On October 22, CureDuchenne Cares will hold its inaugural Family Summit bringing together Duchenne families, medical providers and researchers for a daylong event focused on education and fellowship. The goal of this summit is Read more »

  6. BACK TO SCHOOL: Communicating with the Team

    Posted on August 22, 20164:33 pm

      Guest blog by Celeste Graham, PT, Director of Physical Therapy, CureDuchenne Cares We are at that time of year when the shelves of our local superstores that just recently held beach towels and sunscreen are already being replaced with pencils, binders and backpacks . . . it is BACK TO SCHOOL time!     Read more »

  7. Giving our Sons with Duchenne the Best Care Possible

    Posted on March 18, 20163:16 pm

        When our son, Hawken, was diagnosed 13 years ago, we were told to go home and love your son…there is nothing you can do.  Those doctors were wrong, there was a lot to be done. Our family was blessed from the beginning to have Jennifer Wallace, PT, come into our lives from day Read more »

  8. Expanding and Improving Duchenne Standard of Care

    Posted on September 23, 20154:01 pm

      As a mom of a son with Duchenne, I understand the importance of physical therapy in this disease.  Early after Hawken’s diagnosis, we were referred to a physical therapy facility that knew very little about the nuances of physical therapy for Duchenne.  The PT’s in that state supported clinic actually used strength building exercises Read more »

  9. Welcome Katie Mastro

    Posted on September 22, 20153:59 pm

      We are delighted to announce that Katie Mastro has joined joined CureDuchenne as program services manager. She is responsible for managing and expanding the CureDuchenne Cares program, engaging with families whose loved ones have Duchenne Muscular Dystrophy, and coordinating events. Katie jumped right in and participated in this past weekend’s CureDuchenne Cares workshop in Read more »

  10. Do You kNOW Your Duchenne?

    Posted on September 2, 20154:35 pm

      When our son, Hawken was diagnosed with Duchenne almost 13 years ago, my husband and I felt there couldn’t be too many things worse for a family to experience.  In the years since, I’ve met hundreds of Duchenne families and I’ve realized that many parents had a worse experience than we did. Hawken was Read more »

  11. Treatments on the Horizon

    Posted on May 21, 20153:41 pm

      The Duchenne community is celebrating another promising step toward an approved treatment. On May 19 Sarepta Therapeutics announced plans to submit a rolling NDA for eteplirsen with the final NDA submission landing in the FDA’s hands by mid-year.   CureDuchenne is proud to be part of the support and funding for eteplirsen. We collaborated Read more »

  12. Passion for Physical Therapy and Duchenne Care

    Posted on May 8, 20154:14 pm

    Guest blog by Jennifer Wallace, physical therapist and project manager of CureDuchenne Cares. Yesterday was an important day for me since it was my last day working in a local pediatric physical therapy clinic.  Although I have loved my time at this clinic, I have a strong passion for working with my Duchenne patients.  I Read more »

  13. The PJ Nicholoff Steroid Protocol

    Posted on April 23, 20159:53 pm

    CureDuchenne Cares is pleased to share important information about steroids use for Duchenne patients.    Use of corticosteroids is part of the standards of care for Duchenne patients. Chronic use of steroids is accompanied by side effects, but rapid withdrawal of steroids can lead to serious, life threatening conditions as well. This was exemplified in Read more »

  14. Self-Stretches for Duchenne

    Posted on February 17, 20154:33 pm

      As part of CureDuchenne Cares – a physical therapy, education and outreach program for the Duchenne community – we are pleased to share information on a self-stretching routine for those living with Duchenne muscular dystrophy. CureDuchenne and the Duchenne Therapy Network created a new video blog and a printable handout on stretching. Performing a Read more »