Seeger, Elisa

Post by sroberts in on November 15, 2023

Speaker Information

First Name

ELISA

Last Name

SEEGER

Email

[email protected]

Phone

(917) 750-9390

Organization

ALD Alliance

Job Title

Founder

Credentials

Patient, Caregiver and advocate

As we develop programs and resources to empower our diverse community, we ask participants to select the response that best reflects their race and or ethnicity:

Hispanic, Latino/a, Latine, Latinx

What rare disease(s) do you represent?

ALD and other newborn screening conditions

How many years have you been involved with rare diseases?

10+ years

Name and contact details for the best person for coordinating logistics if other than yourself:

Name	Email
Elisa Seeger	[email protected]

Biography

Elisa Seeger
Aidan Jack Seeger Foundation/ALD Alliance
After losing her son, Aidan to ALD in 2012 at the age of 7, Elisa started this foundation in his honor with the primary goal of having ALD Newborn Screening passed in every state. New York became the first state to start screening for ALD with the addition of “Aidan’s Law” in 2013. Since then, Elisa has worked to help other states add ALD by traveling across the country to speak at newborn screening committee meetings. Elisa had federal bills introduced in 2016 which would mandate newborn screening for ALD nationally. This is still a work in progress and as of 2020 has changed this directive to include all diseases added to the the federal recommended uniform screening panel. The goal is eradication of “Death by Zip Code”, EVERY baby born in the USA should have the same chance at a normal, healthy life. In 2020 the House included language in the appropriations budget and recognized the problem of funding as a delay to implementation. In addition, the foundation hosts an annual ALD Standards of Care meeting every January, has created and ALD Parent’s Guide with the help of clinicians and parents in the community. Through the work of the foundation there was consensus guidelines created for MRI monitoring after newborn screening. Collaboration is key – Elisa takes part of many other groups In 2020 we have decided to change our name to ALD Alliance to welcome other families to join our efforts in the hopes of helping to change the course of ALD.
For more information please contact: [email protected]

Please upload your headshot

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Travel Distance from Los Angeles, CA:

Brooklyn, NY
However I focus on all newborn screening conditions with an emphasis on educating states and putting an end to death by zip code.

Presentation Information

Proposed Presentation Title

Newborn Screening in America Today: Challenges and the need for Change

Presentation Summary

Discussing the status of newborn screening in the United States today.
Although newborn screening is one of the most successful health programs- there is room for change.
As of today, it will take a decade or more before 50 states are testing for conditions added to the Federal Recommended Uniform Screening Panel causing "Death by Zip Code"
Imagine knowing your child would have lived or would not be permanently disabled if they were born in another state?
Unfortunately parents will not know this until it is too late. We need to cut down the time to state implementation and streamline the submission process to the ACHDNC. We have lifesaving therapies available – but our newborn screening system is not identifying babies in time to put these therapies to use.
This presentation will discuss the current state and what we as a rare disease community can do to change this.

Have you spoken previously for NORD?

Have you previously spoken at any rare disease events or are you planning to speak at any upcoming events within the next year?

If yes, please list the name and dates of your speaking engagements .

Bio, ACMG, Hunter's Hope, ULF, ALD Connect, bluebird bio, ACHDNC, State newborn screening committee meetings

Please provide up to 3 examples of previous presentation experience, include links to videos if applicable.

ULF – 2022 – ALD Newborn Screening in the United States

ASGCT – 2022- Advocacy for RUSP Implementation Funding

Hunter's Hope – 2023 – Eradicating Death by Zip Code

Target Audience:

This would appeal to any conditions that currently have an available newborn screening test or any conditions that are currently in the process of creating a test.

Learning Outcomes:

-An outline of Newborn Screening both Federally and in individual States.

-The problems that exist.

-What we can do as a community to create change.

Co-presenter or additional panelist recommendations

First Name	Last Name	Organization	Job Title	Email Address
ELISA	SEEGER	ALD Alliance	Founder	[email protected]

Consent

As a potential speaker for the Living Rare Living Stronger Patient and Family Forum I agree:

– To participate in a panel prep meeting with all speakers in the session between 3 and 4 weeks prior to the conference. (60-minute time blocks will be arranged via calendar invite).
– To use the NORD branded slide deck for any presentation decks that need to be created.
– To register in advance for the conference no later than April 30th. (A complimentary registration code will be provided).
– To respond within 72 business hours to all emails.
– To notify NORD as soon as possible if my participation in the conference becomes no longer possible so that an appropriate replacement can be identified.